Pubdate: Sat, 23 May 2015
Source: Canberra Times (Australia)
Copyright: 2015 Canberra Times
Contact:  http://www.canberratimes.com.au/
Details: http://www.mapinc.org/media/71
Author: Scott Hannaford
Pages: 4-5

A FAMILY'S ANGUISH: BREAKING THE LAW TO EASE ABBEY'S PAIN

Across Australia increasing numbers of families are turning to
cannabis as a last resort to relieve their children's seizures,
chronic pain and a host of other suffering. But with no legal supply
and many doctors unwilling to discuss use of an illegal drug, they are
left to run the gauntlet of trial and error and the uncertainties of
the black market. In this first part of a series looking at the
medicinal cannabis debate, Scott Hannaford meets one family facing
tough choices.

The Department of Family and Community Services officer pulled up next
to the low brick wall, tucked the clipboard under her arm and made her
way up the cracked, paved driveway towards the locked security screen
door. Inside, Kaos the dog pulled down the Spiderman blanket covering
his cage in the middle of the living room and began to howl.

It had been 15 months since the department had taken an interest in
the Dell family, following a tip-off from former ACT Chief Minister
Katy Gallagher that they were giving marijuana to one of their six
autistic children. Now they were back, and Cherie Dell's heart rate
began to quicken.

As she reached for the purple spray bottle to give the barking dog a
squirt, Cherie paused to survey the boxes of medical equipment,
unsorted washing piled high on the sofas and general mayhem in front
of her. She hadn't chosen the name the breeder had given the excitable
white staffie with the brown spots, but as she looked around she
thought, ''chaos sounds about right'', and so the name had stuck.

Life had got a little easier since the dog had arrived. Her youngest
daughter, Abbey, who had received the pet as a companion, had finally
started putting on weight and the terrifying seizures that made her
tiny fists clench tight and her eyes bulge out of their sockets had
become less severe and less frequent. After spending more than half of
her short life in hospital, Abbey's family had recently celebrated 12
months without a trip to the emergency department. Finally something
good was happening. Now the department was knocking on the door again.

It had all started with a phone call, as she bundled her children into
the Ford Territory for the morning run to school.

''Is that Cherie Dell?'' the unfamiliar voice on the phone
asked.

''I'm from the Department of Family and Community Services, and I need
to speak to you urgently about your daughter Abbey.''

''I can't talk now,'' Cherie said, hanging up and stuffing the mobile
phone back into her jeans.

As she tried to coax her eldest daughter Tahlia to sit down and fasten
her seatbelt the phone rang again. And again, and again, and kept
ringing, until eventually she could ignore it no longer.

''What?'' she said, stabbing at the phone with her
thumb.

''We've had a report that you are giving your child an illegal
substance, and we need you to come in for an interview,'' the voice
said.

Last hope

As Cherie had knelt on the living room floor with a syringe of
cannabis oil between her teeth for the first time, she had thought
about what would happen if they ever got caught. They knew it was a
risk, but what choice did they have left?

Looking up from the unmoving body of her profoundly disabled daughter
on the floor in front of her, she locked eyes with Abbey's father Trevor.

Like the other families they had sought out for help, they hadn't
arrived at this point easily. They knew cannabis would probably just
be the latest in a long line of disappointments, and its effectiveness
was largely untested on CDKL5 patients - the crippling rare genetic
disorder that had left Abbey unable to walk, speak or eat without a
tube.

The doctors had all but given up hope, but Cherie couldn't. Besides,
it couldn't be worse than what they had already tried.

The Sabril one doctor had prescribed was known to send some users
blind, so that was out. The high-dose steroids had done nothing
useful, and the Clonazepam drops - the worst of them all - had left
Abbey in a catatonic state, barely able to breathe on her own. Worse,
the pharmaceutical cocktail they had poured into their child every day
for the past 24 months had failed to stop the 20-minute seizures from
blowing out to 45 minutes at a time. They had tried to keep their
expectations low ever since the small brown bottle had arrived in the
post. But for the first time in months they had allowed themselves to
hope, not for a miracle, but just something - anything positive.

The true number of children being treated with cannabis in Australia
is impossible to know, with most families living in fear of either
having their supply cut off or having their children taken away by
child protection authorities.

While cannabis use among adults is common in Australia (about a third
of the population have tried it at least once - one of the highest
rates in the world), the continued prohibition on any form of the drug
has created a medical black-hole, where doctors live in fear of
deregistration for discussing it openly with patients, and desperate
families take their chances on the black market with products of
uncertain quality and strength.

A recent surge in support for medicinal cannabis use in Australia and
a wave of legalisation sweeping across 23 jurisdictions in the United
States has led some states and territories, including the ACT and NSW,
to launch inquiries or announce trials into providing safe access to
the drug for those who have exhausted all legal treatment options.

Advances in genetics and breeding in recent decades have also created
strains of the plant low in the active compound that gets users high,
Tetrahydrocannabinol ( THC), but still rich in other non-psychoactive
cannabinoids like Cannabidiol (CBD) valued for its pain and nausea
relief properties as well as use in reducing seizures.

But with no legal source in Australia, many parents find themselves
juggling their children's doses, upping or lowering the ratio of CBD
to THCA, swapping treatment advice with each other on social media
rather than with their doctors.

Despite high-profile cases such as that of 25-year-old NSW bowel
cancer sufferer Dan Haslam thrusting the issue back into the political
spotlight, cannabis prosecutions in Australia continue to skyrocket.

According to the Australian Crime Commission's latest illicit drug
report, police made a record 66,684 cannabis arrests across Australia
in 2013-2014, the highest in a decade. Of those arrested, 87 per cent
were consumers.

While police typically show little appetite for arresting cancer
patients or parents of epileptic children, most remain wary of
disclosing their use. When the NSW government recently asked
terminally ill patients to sign a register allowing police to turn a
blind eye to their cannabis use, just 40 signed up.

''Sure?'' Cherie asked, as she attached the syringe to the feeding
tube.

''Sure,'' Trevor said, although in truth he was anything
but.

Like most soldiers, the former Canadian infantryman with the
razor-sharp buzz cut, winged maple leaf tattoo on one hand and
kangaroo on the other, had developed a sceptical dislike of illicit
drugs.

''Weak'' is how he would describe those who turned to drugs or drank
heavily to numb the pain of a difficult life. Yet here they were,
about to inject a dose of cannabis into their daughter's stomach.

''You have a choice in front of you,'' he said to himself. ''You can
try to save your child, or you can let her perish.''

End-of-life room

Abbey Dell had been in a hurry to enter the world when on January 29,
2012, she arrived eight weeks and two days early. The tiny girl
weighed not much more than a carton of milk and was only slightly
larger than her father's outstretched hand. But to Cherie, she looked
perfect.

Just over a month later, as she prepared to take her home to join her
three brothers and two sisters, Cherie caught sight of a startled
expression on Abbey's face. She dismissed it as nothing to worry about.

She had always swaddled her babies tightly, but on this afternoon as
she loosened the wrap and laid Abbey carefully on her chest, she felt
the tiny body on top of her tensing and beginning to shake. Fearing
the worst, she called the paediatrician.

''I don't know what's happening, but I think she's having a seizure,''
she told him.

''OK, just stay calm. Try to film it next time it happens then come
and see me in a week,'' the doctor said.

She lifted her trembling hand and tried to point the phone at the
convulsing baby in the pink onesie with the matching dummy lying in
her lap, fighting with every ounce of her strength not to drop the
phone and bundle her baby up in her arms.

Five times she tried and five times she failed, unable to quell the
panic for long enough to capture the look of terror sweeping across
her daughter's face. Finally, she managed to hold out for 47 seconds
before she could watch no more. As she walked into the doctor's office
the following Monday morning and handed him the video of the worst day
of her life, the paediatrician studied the screen carefully before
handing it back to her.

''You're not going home tonight,'' he said.

''I want you to take her straight back to hospital,'' he said, and
reached for his desk phone and began dialling the ward.

It wasn't long before the tonic-clonic seizures and spasms began
stretching out to five minutes, then 10, then 20. Abbey's oxygen
levels began to drop.

''She looks so perfect, tiny, why is this little baby having these
horrible things happen to her?'' she asked one of the nurses. The
battery of blood tests, lumbar punctures and electroencephalograms to
monitor her brain activity had failed to yield any answers.

The months went by and the seizures worsened, until one day a nurse
led Cherie and Trevor down a corridor of the ICU they hadn't been down
before, to a low-lit room with dingy white walls and well-worn sofas.

Inside, the head of the ICU nursing team, Abbey's paediatrician, the
head of neurology and a social worker were waiting for them.

''It is felt that clinically, her condition has a 100 per cent chance
of getting worse,'' the neurologist began, as the doctors took it in
turns to speak.

''The chest infections mean she has a chronic lung condition, and even
if we discharge her we would expect to see her back within a month, at
which point we would be facing an end-of-life situation,'' another
said.

''We estimate she has two months left.''

As the conversation turned to intubation - a one-way street the
doctors explained - Cherie turned to leave. ''I'm not ready to give
up,'' she told the room full of medical staff. ''I'm not going there,
I can't give up on my baby - I won't.''

They had had an expression in Abbey's special needs group - grieving
for the child you thought you were going to have.

''The difference between parents of a typical child and one with a
disability is the aspirations you have for your child to change,''
Trevor had once tried to explain to the doctors in the room.

''You don't aspire for your child to be the best footballer or
ballerina. You aspire for them to have the best possible quality of
life to achieve the inchstones (they preferred the term to milestones
- - it made the achievements sound bigger) they are capable of. You cry,
you get very emotional about any of the hopes and dreams you may have
had when they were in the womb or first born, but it doesn't take away
the love you have for your child.''

As Cherie drove home from the hospital hot tears began to run down her
cheeks. For two years the doctors had tried and failed to help Abbey
with conventional medicine.

She needed another option, they would not simply make the most of what
time they had left, as they had been advised to do.

As she pulled into the driveway of the rented family home, she
remembered a Facebook post she had stumbled on weeks earlier.

Scouring the internet for a possible diagnosis for her daughter's
condition, she had come across a group for families of children
suffering a severe form of epilepsy known as Dravet Syndrome. Parents
in the US with legal access to cannabis were reporting some of their
children had gone from bedridden to riding bikes, and an Australian
mother in the group was also reporting similar results with her son.

Cherie slumped into the converted racing car desk chair in front of
the computer and began scrolling through the old posts until she found
the one she was looking for. She opened a private message window.

''Please help me,'' she began typing. ''I've run out of
options.''

Falling

Trevor had always found the rush of freefall intoxicating, the wind
pulling at his face as he accelerated towards the earth. On arriving
in Australia on an extended holiday he had quickly converted his
Canadian skydiving qualifications and headed to the nearest drop zone.

It was the falling that had led Trevor to Cherie in the first place,
after bad weather had caught him off guard during a jump at Picton,
shattering his right leg in three places on landing. Heading outside
the hospital for a cigarette, he struck up a conversation with Cherie.

But now Trevor was falling again. Had the doctors really just asked
him to give up on his child, to let her quietly slip away? Was there
nothing more he could do as a father?

At home the fights between him and Cherie had become worse, and the
doctors were pushing - always pushing them - towards another meeting
in the 'end-of-life room' as they had started calling it. He began to
withdraw in the only way he knew how, throwing himself into the gym
and the running track and away from the chaos of home.

''At least it was less destructive than drinking,'' he thought to
himself.

Now, sitting on the racing car desk chair he looked at the
instructions Cherie had received from the supplier in Canberra.

''Approach EVERY new case with extreme caution and always assume that
less is more,'' it read.

''If you wean conventional medicines too quickly the patient has high
chances of seizures recurring.''

Cherie drew up a 0.4ml dose, just as the instructions had told her to,
and slowly squeezed the plunger with the pale yellow liquid into the
feeding tube.

Within 24 hours, the intensity of the chronic seizures that had
rattled their daughter's body up to 20 times a day appeared to have
lessened. Within a week their duration had decreased. Within a month
the number of seizures had decreased too, although not completely
disappeared.

Five days after her third birthday - the one the doctors said she had
no hope of ever reaching - Abbey lifted her head and rolled over. She
had started wiggling slowly across the floor in recent days, but this
time Cherie waited before rolling her on to her back. Abbey slowly
tucked up her feet.

''Take a photo,'' Cherie said, slowly lifting Abbey on to her feet and
gently placing the load on to her daughter's legs for the first time.

''She wasn't holding all of her weight, but close enough,'' she typed
into a hurried Facebook post.

''Proud mummy moment times infinity, doing a huge happy dance!'' she
wrote, followed by two smiley faces and four pink and green hearts.

In Canberra, the supplier who had sent them the cannabis solution
clicked on the photo of a beaming Cherie holding up Abbey. Tears began
to run down his face too.

It had been in one of the up times like this, one of Abbey's other big
'inchstones' since starting cannabis treatment that had prompted him
to act.

He opened a new email, addressed it to Katy Gallagher, Greens MLA
Shane Rattenbury and a handful of doctors and attached the brain
scans, a before and after photo of Abbey and the instructions he had
provided for turning the plant buds into oil.

''Gentleman and Minister Gallagher, the child I have been assisting
with her CDKL5 seizure problem has just had an EEG to assess her brain
function after starting a THCA tincture I made for her.

''I am so proud to share this with you. I am proud to have been paid
not one cent for the treatment I provided her - and in fact risked
over ten years in jail to make it so,'' he wrote.

But now reporters had begun ringing Cherie and Trevor's home, telling
them a politician from Canberra they had never heard of had reported
them to the Australian Federal Police and child protection
authorities.

Was it true they had been giving their toddler cannabis? Did they know
their supplier had been raided?

In a panic, Cherie rushed to the fridge and grabbed the half-full
bottle of oil.

Two weeks' worth left, she estimated - but then what? Where would the
next one come from, and what would happen if the police arrived on her
doorstep?

Now, child protection officers were calling her in for an urgent
interview.

She contacted her solicitor, bundled up the folder of papers she had
spent more than a year researching, and headed to the local Department
of Family and Community Services branch office.

As she was led into the interview room, she reached into her folder
and pulled out the charts, showing how the erratic brain activity
caused by the constant seizures had settled into a more steady
pattern, to the point where, for four wonderful days, he Department of
Family and Community Services officer pulled up next to the low brick
wall, tucked the clipboard under her arm and made her way up the
cracked, paved driveway towards the locked security screen door.
Inside, Kaos the dog pulled down the Spiderman blanket covering his
cage in the middle of the living room and began to howl.

It had been 15 months since the department had taken an interest in
the Dell family, following a tip-off from former ACT Chief Minister
Katy Gallagher that they were giving marijuana to one of their six
autistic children. Now they were back, and Cherie Dell's heart rate
began to quicken.

As she reached for the purple spray bottle to give the barking dog a
squirt, Cherie paused to survey the boxes of medical equipment,
unsorted washing piled high on the sofas and general mayhem in front
of her. She hadn't chosen the name the breeder had given the excitable
white staffie with the brown spots, but as she looked around she
thought, ''chaos sounds about right'', and so the name had stuck.

Life had got a little easier since the dog had arrived. Her youngest
daughter, Abbey, who had received the pet as a companion, had finally
started putting on weight and the terrifying seizures that made her
tiny fists clench tight and her eyes bulge out of their sockets had
become less severe and less frequent. After spending more than half of
her short life in hospital, Abbey's family had recently celebrated 12
months without a trip to the emergency department. Finally something
good was happening. Now the department was knocking on the door again.

It had all started with a phone call, as she bundled her children into
the Ford Territory for the morning run to school.

''Is that Cherie Dell?'' the unfamiliar voice on the phone
asked.

''I'm from the Department of Family and Community Services, and I need
to speak to you urgently about your daughter Abbey.''

''I can't talk now,'' Cherie said, hanging up and stuffing the mobile
phone back into her jeans.

As she tried to coax her eldest daughter Tahlia to sit down and fasten
her seatbelt the phone rang again. And again, and again, and kept
ringing, until eventually she could ignore it no longer.

''What?'' she said, stabbing at the phone with her
thumb.

''We've had a report that you are giving your child an illegal
substance, and we need you to come in for an interview,'' the voice
said.

Last hope

As Cherie had knelt on the living room floor with a syringe of
cannabis oil between her teeth for the first time, she had thought
about what would happen if they ever got caught. They knew it was a
risk, but what choice did they have left?

Looking up from the unmoving body of her profoundly disabled daughter
on the floor in front of her, she locked eyes with Abbey's father Trevor.

Like the other families they had sought out for help, they hadn't
arrived at this point easily. They knew cannabis would probably just
be the latest in a long line of disappointments, and its effectiveness
was largely untested on CDKL5 patients - the crippling rare genetic
disorder that had left Abbey unable to walk, speak or eat without a
tube.

The doctors had all but given up hope, but Cherie couldn't. Besides,
it couldn't be worse than what they had already tried.

The Sabril one doctor had prescribed was known to send some users
blind, so that was out. The high-dose steroids had done nothing
useful, and the Clonazepam drops - the worst of them all - had left
Abbey in a catatonic state, barely able to breathe on her own. Worse,
the pharmaceutical cocktail they had poured into their child every day
for the past 24 months had failed to stop the 20-minute seizures from
blowing out to 45 minutes at a time. They had tried to keep their
expectations low ever since the small brown bottle had arrived in the
post. But for the first time in months they had allowed themselves to
hope, not for a miracle, but just something - anything positive.

The true number of children being treated with cannabis in Australia
is impossible to know, with most families living in fear of either
having their supply cut off or having their children taken away by
child protection authorities.

While cannabis use among adults is common in Australia (about a third
of the population have tried it at least once - one of the highest
rates in the world), the continued prohibition on any form of the drug
has created a medical black-hole, where doctors live in fear of
deregistration for discussing it openly with patients, and desperate
families take their chances on the black market with products of
uncertain quality and strength.

A recent surge in support for medicinal cannabis use in Australia and
a wave of legalisation sweeping across 23 jurisdictions in the United
States has led some states and territories, including the ACT and NSW,
to launch inquiries or announce trials into providing safe access to
the drug for those who have exhausted all legal treatment options.

Advances in genetics and breeding in recent decades have also created
strains of the plant low in the active compound that gets users high,
Tetrahydrocannabinol ( THC), but still rich in other non-psychoactive
cannabinoids like Cannabidiol (CBD) valued for its pain and nausea
relief properties as well as use in reducing seizures.

But with no legal source in Australia, many parents find themselves
juggling their children's doses, upping or lowering the ratio of CBD
to THCA, swapping treatment advice with each other on social media
rather than with their doctors.

Despite high-profile cases such as that of 25-year-old NSW bowel
cancer sufferer Dan Haslam thrusting the issue back into the political
spotlight, cannabis prosecutions in Australia continue to skyrocket.

According to the Australian Crime Commission's latest illicit drug
report, police made a record 66,684 cannabis arrests across Australia
in 2013-2014, the highest in a decade. Of those arrested, 87 per cent
were consumers.

While police typically show little appetite for arresting cancer
patients or parents of epileptic children, most remain wary of
disclosing their use. When the NSW government recently asked
terminally ill patients to sign a register allowing police to turn a
blind eye to their cannabis use, just 40 signed up.

''Sure?'' Cherie asked, as she attached the syringe to the feeding
tube.

''Sure,'' Trevor said, although in truth he was anything
but.

Like most soldiers, the former Canadian infantryman with the
razor-sharp buzz cut, winged maple leaf tattoo on one hand and
kangaroo on the other, had developed a sceptical dislike of illicit
drugs.

''Weak'' is how he would describe those who turned to drugs or drank
heavily to numb the pain of a difficult life. Yet here they were,
about to inject a dose of cannabis into their daughter's stomach.

''You have a choice in front of you,'' he said to himself. ''You can
try to save your child, or you can let her perish.''

End-of-life room

Abbey Dell had been in a hurry to enter the world when on January 29,
2012, she arrived eight weeks and two days early. The tiny girl
weighed not much more than a carton of milk and was only slightly
larger than her father's outstretched hand. But to Cherie, she looked
perfect.

Just over a month later, as she prepared to take her home to join her
three brothers and two sisters, Cherie caught sight of a startled
expression on Abbey's face. She dismissed it as nothing to worry about.

She had always swaddled her babies tightly, but on this afternoon as
she loosened the wrap and laid Abbey carefully on her chest, she felt
the tiny body on top of her tensing and beginning to shake. Fearing
the worst, she called the paediatrician.

''I don't know what's happening, but I think she's having a seizure,''
she told him.

''OK, just stay calm. Try to film it next time it happens then come
and see me in a week,'' the doctor said.

She lifted her trembling hand and tried to point the phone at the
convulsing baby in the pink onesie with the matching dummy lying in
her lap, fighting with every ounce of her strength not to drop the
phone and bundle her baby up in her arms.

Five times she tried and five times she failed, unable to quell the
panic for long enough to capture the look of terror sweeping across
her daughter's face. Finally, she managed to hold out for 47 seconds
before she could watch no more. As she walked into the doctor's office
the following Monday morning and handed him the video of the worst day
of her life, the paediatrician studied the screen carefully before
handing it back to her.

''You're not going home tonight,'' he said.

''I want you to take her straight back to hospital,'' he said, and
reached for his desk phone and began dialling the ward.

It wasn't long before the tonic-clonic seizures and spasms began
stretching out to five minutes, then 10, then 20. Abbey's oxygen
levels began to drop.

''She looks so perfect, tiny, why is this little baby having these
horrible things happen to her?'' she asked one of the nurses. The
battery of blood tests, lumbar punctures and electroencephalograms to
monitor her brain activity had failed to yield any answers.

The months went by and the seizures worsened, until one day a nurse
led Cherie and Trevor down a corridor of the ICU they hadn't been down
before, to a low-lit room with dingy white walls and well-worn sofas.

Inside, the head of the ICU nursing team, Abbey's paediatrician, the
head of neurology and a social worker were waiting for them.

''It is felt that clinically, her condition has a 100 per cent chance
of getting worse,'' the neurologist began, as the doctors took it in
turns to speak.

''The chest infections mean she has a chronic lung condition, and even
if we discharge her we would expect to see her back within a month, at
which point we would be facing an end-of-life situation,'' another
said.

''We estimate she has two months left.''

As the conversation turned to intubation - a one-way street the
doctors explained - Cherie turned to leave. ''I'm not ready to give
up,'' she told the room full of medical staff. ''I'm not going there,
I can't give up on my baby - I won't.''

They had had an expression in Abbey's special needs group - grieving
for the child you thought you were going to have.

''The difference between parents of a typical child and one with a
disability is the aspirations you have for your child to change,''
Trevor had once tried to explain to the doctors in the room.

''You don't aspire for your child to be the best footballer or
ballerina. You aspire for them to have the best possible quality of
life to achieve the inchstones (they preferred the term to milestones
- - it made the achievements sound bigger) they are capable of. You cry,
you get very emotional about any of the hopes and dreams you may have
had when they were in the womb or first born, but it doesn't take away
the love you have for your child.''

As Cherie drove home from the hospital hot tears began to run down her
cheeks. For two years the doctors had tried and failed to help Abbey
with conventional medicine.

She needed another option, they would not simply make the most of what
time they had left, as they had been advised to do.

As she pulled into the driveway of the rented family home, she
remembered a Facebook post she had stumbled on weeks earlier.

Scouring the internet for a possible diagnosis for her daughter's
condition, she had come across a group for families of children
suffering a severe form of epilepsy known as Dravet Syndrome. Parents
in the US with legal access to cannabis were reporting some of their
children had gone from bedridden to riding bikes, and an Australian
mother in the group was also reporting similar results with her son.

Cherie slumped into the converted racing car desk chair in front of
the computer and began scrolling through the old posts until she found
the one she was looking for. She opened a private message window.

''Please help me,'' she began typing. ''I've run out of
options.''

Falling

Trevor had always found the rush of freefall intoxicating, the wind
pulling at his face as he accelerated towards the earth. On arriving
in Australia on an extended holiday he had quickly converted his
Canadian skydiving qualifications and headed to the nearest drop zone.

It was the falling that had led Trevor to Cherie in the first place,
after bad weather had caught him off guard during a jump at Picton,
shattering his right leg in three places on landing. Heading outside
the hospital for a cigarette, he struck up a conversation with Cherie.

But now Trevor was falling again. Had the doctors really just asked
him to give up on his child, to let her quietly slip away? Was there
nothing more he could do as a father?

At home the fights between him and Cherie had become worse, and the
doctors were pushing - always pushing them - towards another meeting
in the 'end-of-life room' as they had started calling it. He began to
withdraw in the only way he knew how, throwing himself into the gym
and the running track and away from the chaos of home.

''At least it was less destructive than drinking,'' he thought to
himself.

Now, sitting on the racing car desk chair he looked at the
instructions Cherie had received from the supplier in Canberra.

''Approach EVERY new case with extreme caution and always assume that
less is more,'' it read.

''If you wean conventional medicines too quickly the patient has high
chances of seizures recurring.''

Cherie drew up a 0.4ml dose, just as the instructions had told her to,
and slowly squeezed the plunger with the pale yellow liquid into the
feeding tube.

Within 24 hours, the intensity of the chronic seizures that had
rattled their daughter's body up to 20 times a day appeared to have
lessened. Within a week their duration had decreased. Within a month
the number of seizures had decreased too, although not completely
disappeared.

Five days after her third birthday - the one the doctors said she had
no hope of ever reaching - Abbey lifted her head and rolled over. She
had started wiggling slowly across the floor in recent days, but this
time Cherie waited before rolling her on to her back. Abbey slowly
tucked up her feet.

''Take a photo,'' Cherie said, slowly lifting Abbey on to her feet and
gently placing the load on to her daughter's legs for the first time.

''She wasn't holding all of her weight, but close enough,'' she typed
into a hurried Facebook post.

''Proud mummy moment times infinity, doing a huge happy dance!'' she
wrote, followed by two smiley faces and four pink and green hearts.

In Canberra, the supplier who had sent them the cannabis solution
clicked on the photo of a beaming Cherie holding up Abbey. Tears began
to run down his face too.

It had been in one of the up times like this, one of Abbey's other big
'inchstones' since starting cannabis treatment that had prompted him
to act.

He opened a new email, addressed it to Katy Gallagher, Greens MLA
Shane Rattenbury and a handful of doctors and attached the brain
scans, a before and after photo of Abbey and the instructions he had
provided for turning the plant buds into oil.

''Gentleman and Minister Gallagher, the child I have been assisting
with her CDKL5 seizure problem has just had an EEG to assess her brain
function after starting a THCA tincture I made for her.

''I am so proud to share this with you. I am proud to have been paid
not one cent for the treatment I provided her - and in fact risked
over ten years in jail to make it so,'' he wrote.

But now reporters had begun ringing Cherie and Trevor's home, telling
them a politician from Canberra they had never heard of had reported
them to the Australian Federal Police and child protection
authorities.

Was it true they had been giving their toddler cannabis? Did they know
their supplier had been raided?

In a panic, Cherie rushed to the fridge and grabbed the half-full
bottle of oil.

Two weeks' worth left, she estimated - but then what? Where would the
next one come from, and what would happen if the police arrived on her
doorstep?

Now, child protection officers were calling her in for an urgent
interview.

She contacted her solicitor, bundled up the folder of papers she had
spent more than a year researching, and headed to the local Department
of Family and Community Services branch office.

As she was led into the interview room, she reached into her folder
and pulled out the charts, showing how the erratic brain activity
caused by the constant seizures had settled into a more steady
pattern, to the point where, for four wonderful days, he Department of
Family and Community Services officer pulled up next to the low brick
wall, tucked the clipboard under her arm and made her way up the
cracked, paved driveway towards the locked security screen door.
Inside, Kaos the dog pulled down the Spiderman blanket covering his
cage in the middle of the living room and began to howl.

It had been 15 months since the department had taken an interest in
the Dell family, following a tip-off from former ACT Chief Minister
Katy Gallagher that they were giving marijuana to one of their six
autistic children. Now they were back, and Cherie Dell's heart rate
began to quicken.

As she reached for the purple spray bottle to give the barking dog a
squirt, Cherie paused to survey the boxes of medical equipment,
unsorted washing piled high on the sofas and general mayhem in front
of her. She hadn't chosen the name the breeder had given the excitable
white staffie with the brown spots, but as she looked around she
thought, ''chaos sounds about right'', and so the name had stuck.

Life had got a little easier since the dog had arrived. Her youngest
daughter, Abbey, who had received the pet as a companion, had finally
started putting on weight and the terrifying seizures that made her
tiny fists clench tight and her eyes bulge out of their sockets had
become less severe and less frequent. After spending more than half of
her short life in hospital, Abbey's family had recently celebrated 12
months without a trip to the emergency department. Finally something
good was happening. Now the department was knocking on the door again.

It had all started with a phone call, as she bundled her children into
the Ford Territory for the morning run to school.

''Is that Cherie Dell?'' the unfamiliar voice on the phone
asked.

''I'm from the Department of Family and Community Services, and I need
to speak to you urgently about your daughter Abbey.''

''I can't talk now,'' Cherie said, hanging up and stuffing the mobile
phone back into her jeans.

As she tried to coax her eldest daughter Tahlia to sit down and fasten
her seatbelt the phone rang again. And again, and again, and kept
ringing, until eventually she could ignore it no longer.

''What?'' she said, stabbing at the phone with her
thumb.

''We've had a report that you are giving your child an illegal
substance, and we need you to come in for an interview,'' the voice
said.

Last hope

As Cherie had knelt on the living room floor with a syringe of
cannabis oil between her teeth for the first time, she had thought
about what would happen if they ever got caught. They knew it was a
risk, but what choice did they have left?

Looking up from the unmoving body of her profoundly disabled daughter
on the floor in front of her, she locked eyes with Abbey's father Trevor.

Like the other families they had sought out for help, they hadn't
arrived at this point easily. They knew cannabis would probably just
be the latest in a long line of disappointments, and its effectiveness
was largely untested on CDKL5 patients - the crippling rare genetic
disorder that had left Abbey unable to walk, speak or eat without a
tube.

The doctors had all but given up hope, but Cherie couldn't. Besides,
it couldn't be worse than what they had already tried.

The Sabril one doctor had prescribed was known to send some users
blind, so that was out. The high-dose steroids had done nothing
useful, and the Clonazepam drops - the worst of them all - had left
Abbey in a catatonic state, barely able to breathe on her own. Worse,
the pharmaceutical cocktail they had poured into their child every day
for the past 24 months had failed to stop the 20-minute seizures from
blowing out to 45 minutes at a time. They had tried to keep their
expectations low ever since the small brown bottle had arrived in the
post. But for the first time in months they had allowed themselves to
hope, not for a miracle, but just something - anything positive.

The true number of children being treated with cannabis in Australia
is impossible to know, with most families living in fear of either
having their supply cut off or having their children taken away by
child protection authorities.

While cannabis use among adults is common in Australia (about a third
of the population have tried it at least once - one of the highest
rates in the world), the continued prohibition on any form of the drug
has created a medical black-hole, where doctors live in fear of
deregistration for discussing it openly with patients, and desperate
families take their chances on the black market with products of
uncertain quality and strength.

A recent surge in support for medicinal cannabis use in Australia and
a wave of legalisation sweeping across 23 jurisdictions in the United
States has led some states and territories, including the ACT and NSW,
to launch inquiries or announce trials into providing safe access to
the drug for those who have exhausted all legal treatment options.

Advances in genetics and breeding in recent decades have also created
strains of the plant low in the active compound that gets users high,
Tetrahydrocannabinol ( THC), but still rich in other non-psychoactive
cannabinoids like Cannabidiol (CBD) valued for its pain and nausea
relief properties as well as use in reducing seizures.

But with no legal source in Australia, many parents find themselves
juggling their children's doses, upping or lowering the ratio of CBD
to THCA, swapping treatment advice with each other on social media
rather than with their doctors.

Despite high-profile cases such as that of 25-year-old NSW bowel
cancer sufferer Dan Haslam thrusting the issue back into the political
spotlight, cannabis prosecutions in Australia continue to skyrocket.

According to the Australian Crime Commission's latest illicit drug
report, police made a record 66,684 cannabis arrests across Australia
in 2013-2014, the highest in a decade. Of those arrested, 87 per cent
were consumers.

While police typically show little appetite for arresting cancer
patients or parents of epileptic children, most remain wary of
disclosing their use. When the NSW government recently asked
terminally ill patients to sign a register allowing police to turn a
blind eye to their cannabis use, just 40 signed up.

''Sure?'' Cherie asked, as she attached the syringe to the feeding
tube.

''Sure,'' Trevor said, although in truth he was anything
but.

Like most soldiers, the former Canadian infantryman with the
razor-sharp buzz cut, winged maple leaf tattoo on one hand and
kangaroo on the other, had developed a sceptical dislike of illicit
drugs.

''Weak'' is how he would describe those who turned to drugs or drank
heavily to numb the pain of a difficult life. Yet here they were,
about to inject a dose of cannabis into their daughter's stomach.

''You have a choice in front of you,'' he said to himself. ''You can
try to save your child, or you can let her perish.''

End-of-life room

Abbey Dell had been in a hurry to enter the world when on January 29,
2012, she arrived eight weeks and two days early. The tiny girl
weighed not much more than a carton of milk and was only slightly
larger than her father's outstretched hand. But to Cherie, she looked
perfect.

Just over a month later, as she prepared to take her home to join her
three brothers and two sisters, Cherie caught sight of a startled
expression on Abbey's face. She dismissed it as nothing to worry about.

She had always swaddled her babies tightly, but on this afternoon as
she loosened the wrap and laid Abbey carefully on her chest, she felt
the tiny body on top of her tensing and beginning to shake. Fearing
the worst, she called the paediatrician.

''I don't know what's happening, but I think she's having a seizure,''
she told him.

''OK, just stay calm. Try to film it next time it happens then come
and see me in a week,'' the doctor said.

She lifted her trembling hand and tried to point the phone at the
convulsing baby in the pink onesie with the matching dummy lying in
her lap, fighting with every ounce of her strength not to drop the
phone and bundle her baby up in her arms.

Five times she tried and five times she failed, unable to quell the
panic for long enough to capture the look of terror sweeping across
her daughter's face. Finally, she managed to hold out for 47 seconds
before she could watch no more. As she walked into the doctor's office
the following Monday morning and handed him the video of the worst day
of her life, the paediatrician studied the screen carefully before
handing it back to her.

''You're not going home tonight,'' he said.

''I want you to take her straight back to hospital,'' he said, and
reached for his desk phone and began dialling the ward.

It wasn't long before the tonic-clonic seizures and spasms began
stretching out to five minutes, then 10, then 20. Abbey's oxygen
levels began to drop.

''She looks so perfect, tiny, why is this little baby having these
horrible things happen to her?'' she asked one of the nurses. The
battery of blood tests, lumbar punctures and electroencephalograms to
monitor her brain activity had failed to yield any answers.

The months went by and the seizures worsened, until one day a nurse
led Cherie and Trevor down a corridor of the ICU they hadn't been down
before, to a low-lit room with dingy white walls and well-worn sofas.

Inside, the head of the ICU nursing team, Abbey's paediatrician, the
head of neurology and a social worker were waiting for them.

''It is felt that clinically, her condition has a 100 per cent chance
of getting worse,'' the neurologist began, as the doctors took it in
turns to speak.

''The chest infections mean she has a chronic lung condition, and even
if we discharge her we would expect to see her back within a month, at
which point we would be facing an end-of-life situation,'' another
said.

''We estimate she has two months left.''

As the conversation turned to intubation - a one-way street the
doctors explained - Cherie turned to leave. ''I'm not ready to give
up,'' she told the room full of medical staff. ''I'm not going there,
I can't give up on my baby - I won't.''

They had had an expression in Abbey's special needs group - grieving
for the child you thought you were going to have.

''The difference between parents of a typical child and one with a
disability is the aspirations you have for your child to change,''
Trevor had once tried to explain to the doctors in the room.

''You don't aspire for your child to be the best footballer or
ballerina. You aspire for them to have the best possible quality of
life to achieve the inchstones (they preferred the term to milestones
- - it made the achievements sound bigger) they are capable of. You cry,
you get very emotional about any of the hopes and dreams you may have
had when they were in the womb or first born, but it doesn't take away
the love you have for your child.''

As Cherie drove home from the hospital hot tears began to run down her
cheeks. For two years the doctors had tried and failed to help Abbey
with conventional medicine.

She needed another option, they would not simply make the most of what
time they had left, as they had been advised to do.

As she pulled into the driveway of the rented family home, she
remembered a Facebook post she had stumbled on weeks earlier.

Scouring the internet for a possible diagnosis for her daughter's
condition, she had come across a group for families of children
suffering a severe form of epilepsy known as Dravet Syndrome. Parents
in the US with legal access to cannabis were reporting some of their
children had gone from bedridden to riding bikes, and an Australian
mother in the group was also reporting similar results with her son.

Cherie slumped into the converted racing car desk chair in front of
the computer and began scrolling through the old posts until she found
the one she was looking for. She opened a private message window.

''Please help me,'' she began typing. ''I've run out of
options.''

Falling

Trevor had always found the rush of freefall intoxicating, the wind
pulling at his face as he accelerated towards the earth. On arriving
in Australia on an extended holiday he had quickly converted his
Canadian skydiving qualifications and headed to the nearest drop zone.

It was the falling that had led Trevor to Cherie in the first place,
after bad weather had caught him off guard during a jump at Picton,
shattering his right leg in three places on landing. Heading outside
the hospital for a cigarette, he struck up a conversation with Cherie.

But now Trevor was falling again. Had the doctors really just asked
him to give up on his child, to let her quietly slip away? Was there
nothing more he could do as a father?

At home the fights between him and Cherie had become worse, and the
doctors were pushing - always pushing them - towards another meeting
in the 'end-of-life room' as they had started calling it. He began to
withdraw in the only way he knew how, throwing himself into the gym
and the running track and away from the chaos of home.

''At least it was less destructive than drinking,'' he thought to
himself.

Now, sitting on the racing car desk chair he looked at the
instructions Cherie had received from the supplier in Canberra.

''Approach EVERY new case with extreme caution and always assume that
less is more,'' it read.

''If you wean conventional medicines too quickly the patient has high
chances of seizures recurring.''

Cherie drew up a 0.4ml dose, just as the instructions had told her to,
and slowly squeezed the plunger with the pale yellow liquid into the
feeding tube.

Within 24 hours, the intensity of the chronic seizures that had
rattled their daughter's body up to 20 times a day appeared to have
lessened. Within a week their duration had decreased. Within a month
the number of seizures had decreased too, although not completely
disappeared.

Five days after her third birthday - the one the doctors said she had
no hope of ever reaching - Abbey lifted her head and rolled over. She
had started wiggling slowly across the floor in recent days, but this
time Cherie waited before rolling her on to her back. Abbey slowly
tucked up her feet.

''Take a photo,'' Cherie said, slowly lifting Abbey on to her feet and
gently placing the load on to her daughter's legs for the first time.

''She wasn't holding all of her weight, but close enough,'' she typed
into a hurried Facebook post.

''Proud mummy moment times infinity, doing a huge happy dance!'' she
wrote, followed by two smiley faces and four pink and green hearts.

In Canberra, the supplier who had sent them the cannabis solution
clicked on the photo of a beaming Cherie holding up Abbey. Tears began
to run down his face too.

It had been in one of the up times like this, one of Abbey's other big
'inchstones' since starting cannabis treatment that had prompted him
to act.

He opened a new email, addressed it to Katy Gallagher, Greens MLA
Shane Rattenbury and a handful of doctors and attached the brain
scans, a before and after photo of Abbey and the instructions he had
provided for turning the plant buds into oil.

''Gentleman and Minister Gallagher, the child I have been assisting
with her CDKL5 seizure problem has just had an EEG to assess her brain
function after starting a THCA tincture I made for her.

''I am so proud to share this with you. I am proud to have been paid
not one cent for the treatment I provided her - and in fact risked
over ten years in jail to make it so,'' he wrote.

But now reporters had begun ringing Cherie and Trevor's home, telling
them a politician from Canberra they had never heard of had reported
them to the Australian Federal Police and child protection
authorities.

Was it true they had been giving their toddler cannabis? Did they know
their supplier had been raided?

In a panic, Cherie rushed to the fridge and grabbed the half-full
bottle of oil.

Two weeks' worth left, she estimated - but then what? Where would the
next one come from, and what would happen if the police arrived on her
doorstep?

Now, child protection officers were calling her in for an urgent
interview.

She contacted her solicitor, bundled up the folder of papers she had
spent more than a year researching, and headed to the local Department
of Family and Community Services branch office.

As she was led into the interview room, she reached into her folder
and pulled out the charts, showing how the erratic brain activity
caused by the constant seizures had settled into a more steady
pattern, to the point where, for four wonderful days, Abbey had gone
without a seizure.

Next, she pulled out the list of medications with the hospital logo on
the top of the page which included the words, 'medical cannabis'.

Finally, she pulled out the chart showing the activities, massage
therapy and exercises Cherie had drawn up for her daughter.

For two-and-a-half hours she spoke, presenting the evidence, research
and treatment regime she had in place. When she finally stopped
talking, one of the officers handed back the folder and placed a hand
on Cherie's shoulder.

"We don't want to know where you get it from," the official said. "You
are doing a great job, keep giving it to her."

The long swait

He had once joked that some politicians made pretty good boat anchors.
But the news that theACT Chief Minister had begun receiving death
threats for reporting Abbey's cannabis treatment bothered Trevor deeply.

He had always been a private person who preferred to keep his family's
business just that, private, and while he appreciated the support, he
was not in favour of threats.

Having worked in management positions himself, he understood that in
some jobs, you don't get to make emotional decisions, you have to
follow rules, and Katy Gallagher had just been doing her job. What he
did resent though, was that no one had bothered to talk to him before
deciding to turn his family's life upside down.

For her part Katy Gallagher has repeatedly said she did not know the
family or instruct anyone to visit or call them, she had simply
followed her legal obligation under child protection laws and sent the
email she had received to the appropriate authorities.

"She could have asked, 'why are you doing this?' She could have come
and seen Abbey and I could have explained it to her, and if she'd
given me the courtesy of saying, 'regardless of what's going on I need
to make a report,' it wouldn't have been so bad," Trevor said.

Shortly after the raid and the call from child protection, Abbey's
doctors suggested she might be eligible for a possible trial of
synthetic cannabinoids. With NSW premier Mike Baird having also
announced medicinal cannabis trials, there was also hope that a legal
supply might become available at some point in the future.

But the risk of finding their daughter on a placebo, using her as a
guinea pig for a largely untested drug, or waiting five to six years
for the scientists to conduct their trials didn't sound to Cherie and
Trevor like viable options for the little girl who was never supposed
to make it past two.

Shortly after word had gotten out about their situation, offers of
help had started flooding in via the fundraising page.

There were the usual snake-oil salesmen, trying to charge hundreds of
dollars a month for access to cannabis oil, then there were the drug
dealers and the time wasters.

But a man known to the first supplier had also sent a message and
seemed genuine about wanting to help.

Why so hard?

As Cherie unlocked the front door for the woman with the clipboard,
she thought about the first phone call from the department 15 months
ago and wondered why they were now standing on her front step again.

"How's the feeding going?" the woman with the clipboard
asked.

"Good."

"When was she last in hospital?"

"Over a year ago now," Cherie said, looking down at Abbey who she had
dressed that day in her favourite skirt, the blue one with the shiny
sequins.

"We can try to get some service to help with the kids, but I can't
guarantee it'll be a long term solution. Will you agree to me having
access to Abbey's latest medical reports?" the woman asked.

"Why? She's obviously a high-needs child, you can tell that just by
looking at her," Cherie said, making little attempt to mask her
displeasure at the line of questioning.

"I'll have a look at whether there might be support under the NDIS as
well but I can't guarantee there's eligibility or services available,"
the woman said again, folding away her papers and moving towards the
front door.

"God I hate that, why do they have to make it so hard?" Cherie said
just loud enough for the woman to hear as she walked back towards her
car.

"Always the same, prying into your private life and then telling you,
'we can't guarantee anything'".

Recently she and Trevor had discussed upgrading the car for a modified
vehicle that could take a wheelchair for Abbey, who was becoming too
heavy for Cherie to lift on her own.

But a new vehicle with the conversion was going to cost $80,000 to
$90,000, and Cherie wasn't keen on taking a chance with a secondhand
one that might leave her stranded on the side of the road with the
children.

"Realistically, if we trade in the car we'd probably have enough
savings to start on that, or we could put it towards a house deposit,
but not both," Trevor said to Cherie.

"So it's a choice, we either continue to live on top of each other
where no one has their own space, or we get a bigger place and can't
go anywhere."

He walked into the kitchen, pulled a bottle of water out of the fridge
and sat down in front of the baby photos on the computer screen he had
been scrolling through earlier that day. It was probably time he
updated the fundraising page, but lately he had been too exhausted,
and soon he would have to go to work to start the late shift. He
paused on an image of Abbey in a humidicrib, a blue tube coming out of
her mouth and four tiny fingers wrapped gently around his right thumb.

"We're not perfect parents," he said, "but who is?"

"Sometimes we don't have space to put everything away, but our kids
are loved and cared for, we don't go out drinking, we don't throw our
money into the pokies, and we don't sit around saying, 'poor us'. We
do the best we can with what we got."

Cherie bent down and lifted the blanket off the floor, spreading it
back over the top of the cage. The dog had come in from his afternoon
run with the children and was ready to resume working on the bone he
had begun gnawing on that morning. A slow crunching sound came out
from under the blanket. Finally, Kaos was beginning to settle.
- ---
MAP posted-by: Matt