Pubdate: Tue, 11 Feb 2014
Source: Pottstown Mercury (PA)
Page: A1
Copyright: 2014 The Mercury, a Journal Register Property
Contact:  http://www.pottstownmercury.com/
Details: http://www.mapinc.org/media/2287
Author: Michilea Patterson

HOLDING OUT HOPE

Mom Believes Medical Marijuana Could Help Daughter

Sandy Kaercher sits down to drink her morning coffee, but before the
first sip, her daughter's school calls.

Kaercher of East Coventry answers with a concerned "yes" as she's done
countless times before. Her daughter Grace, 15, had a seizure and the
school nurse gave her the rescue medication Grace always carries in a
bracelet.

"The bad days tend to steal my hope," Kaercher said.

Kaercher said no matter what treatments Grace is on, the seizures
continue. She has tried every option except medical marijuana, which
isn't legal in Pennsylvania, Kaercher said.

"Marijuana isn't that extreme compared to all these other things we
have done," Kaercher said.

Kaercher, 45, has watched her daughter suffer from seizures since
Grace was a baby.

"One year after our beautiful, healthy daughter was born, we found
ourselves in the hospital," Kaercher said. Kaercher's oldest daughter
Emily was playing with Grace's twin, Adam, one late afternoon.
Kaercher heard Grace stirring in her crib and picked her up but
immediately noticed Grace had a fever.

"In a matter of seconds my life changed," Kaercher said. Grace
twitched in Kaercher's arms then her body suddenly became lifeless.

"I thought she was dying," Kaercher said.

As Kaercher frantically dialed 911, her only thought was not to let
her other children see their sister die.

Grace's pediatrician said high fever caused the first seizure.
Seizures occur when brief but strong electrical activity affects part
or all of the brain,

After Grace's first seizure, Kaercher became alarmed by Grace's
eyes.

"We started to notice something ... like a distance in her eyes,"
Kaercher said. The doctor said Kaercher was obsessing over Grace's
first episode but a year later, Grace was diagnosed with epilepsy, the
medical condition that produces ongoing seizures.

Doctors said 2-year-old Grace was having about six absence seizures a
minute. Absence seizures are usually brief and cause children to stare
vacantly, not speaking or hearing.

After Grace's diagnosis, Kaercher said she was unsure what the future
held.

"And so it began, doctors, tests, medications, more tests and a life
clouded by the unknown," Kaercher said.

Kaercher said people's misconceptions of marijuana have prevented a
lot of people being helped.

Kaercher said she learned of the possible benefits of medical
marijuana to Grace after the media attention of the CNN program that
featured a couple from Colorado who tried medical marijuana on their
child with epilepsy and succeeded. Some of Grace's doctors have even
mentioned it as an option, Kaercher said.

"My daughter has been on everything. She currently takes five pills in
the morning, two in the afternoon and 10 at night," Kaercher said.

Kaercher said the hardship is watching her daughter's seizures and not
being able to stop them.

She said parents go through extreme measures to help their children.
Kaercher has even tried drugs that sometimes have fatal repercussions.
Grace has tried all the seizure medications in the U.S. and we've even
searched in other countries, Kaercher said. She said they have
exhausted all current options for treatment.

Kaercher explained that there are four treatments available for
epilepsy.

"You do drug therapy, brain surgery, the ketogenic diet or the VNS
therapy," Kaercher said.

Grace has done multiple drug therapies and is currently on a research
drug that isn't on the market yet. Grace isn't a candidate for brain
surgery because her seizures vary and happen in different places in
the brain. Grace was on the ketogenic diet, twice, once in elementary
school and tried it again this past summer with no success. The
ketogenic is a fasting diet consisting of oils, fats and cream.
Kaercher said she thinks it stunted Grace's growth, now just under
five feet tall. Grace is currently using the VNS therapy, which is a
computer implant in her chest that uses shock therapy to stop seizures.

Grace is now a ninth grader at Owen J. Roberts High School and still
endures several daily seizures. Kaercher said there isn't a typical
day for Grace and usually starts every morning with a seizure.

"There is no rhyme or reason and we can't find a pattern," Kaercher
said.

Kaercher said Grace has daily seizures where she stares and fades
away. She also has daily collapsing seizures and generalized shaking
seizures one to two times a week, Kaercher said.

Kaercher said she at least wants the choice of medical
marijuana.

"It would be nice to have the option of another drug," Kaercher
said.

On Jan. 28, the Pennsylvania Senate Law and Justice Committee heard
several testimonies in Harrisburg supporting Senate Bill 1182 that
would legalize medical cannabis for individuals with disorders such as
multiple sclerosis, cancer and epilepsy. The bipartisan bill is
sponsored by Sen. Mike Folmer, RBerks/Chester, and Sen. Daylin Leach,
D-Montgomery/Delaware.

Leach said the bill is not only bipartisan but is being sponsored by
one of the most liberal (himself) and one of the most conservative
(Folmer) legislators in Pennsylvania. He said this issue has nothing
to do with politics but about helping children.

"Getting children the medicine they need is not something to disagree
on, it's something we should just do," Leach said. He also said the
number of Pennsylvanians medical cannabis can help is "undoubtedly
very high."

The seizures' effects vary since Grace has different types. With a
large seizure, Grace will sleep and sometimes take days to recover,
Kaercher said.

Grace has also experienced behavioral changes because of the
medication she's on. Kaercher said sometimes Grace was so medicated
that "we seem to lose her to another world."

Kaercher remembers Grace was 31/2 years old when she came off a
medication that wasn't working and Grace started to laugh.

"I never heard her laugh before," Kaercher said. "It was just a
wonderful thing."

Not only does Grace's medication pose a possible risk to her health
but she also has to watch out for the seizures themselves and
triggers, Kaercher said.

A baby monitor is kept in Grace's room at night because she's at risk
of Sudden Unexpected Death in Epilepsy Patients and Kaercher said this
is known to happen during sleep. Grace also loves to swim but falling
water can cause seizures and Grace has to be extremely careful even in
the shower, Kaercher said. Stairs can even be dangerous for Grace, if
she happens to have a seizure while going up or down, Kaercher said.

Folmer said he met some mothers of children with epilepsy a year and a
half ago and there weren't any large corporate groups lobbying for
those parents.

Gov. Tom Corbett has made public statements saying he would veto a
bill that legalized marijuana because marijuana is a gateway drug.

Folmer said the governor is being very cautious and he understands his
point of view but wants to share with him face-to-face the research he
discovered. Former said he used to have misconceptions about cannabis.

"I'm a Christian and a conservative Republican," Folmer said, adding
he has seen the studies and knows cannabis has medical uses. "The No.
1 reason for doing this bill is to help sick people."

Kaercher said there is too much red tape around the research of
marijuana. Marijuana is considered a Schedule 1 controlled substance
under the Food and Drug Administration which creates roadblocks to
research its medical uses, Kaercher said.

"Should we have to resort to criminal behavior as parents to help our
children?" Kaercher asked.

Kaercher said she wants at least the opportunity to see if medical
marijuana could help Grace. Kaercher said Grace is "the sweetest girl"
and wants people to know Grace as a person first without the stigma of
epilepsy.

"It's important to know that Grace is like most any other young girl,"
Kaercher said.

Grace likes to ride bicycles, go camping, fish, swim and she even
participates in the Special Olympics skiing program, Kaercher said.
Grace started riding horses when she was in kindergarten as therapy
and she enjoys riding her white horse named Snowy. Kaercher said Grace
loves animals such as her dog, Biscuit. Grace also excitedly showed
off a stuffed animal dog bigger than her that she named Scooby-Doo.
Grace also likes to play with Legos and has her own "Lego Room" in the
house.

Kaercher said there is more to Grace than her seizures. Kaercher said
once people look past the epilepsy, they can begin to know the
beautiful, wonderful person Grace is.

With a big smile and huge Hazel eyes, Grace sung one of her favorite
songs "Beautiful Day" by Christian singer Jamie Grace who has
Tourette's syndrome. Kaercher said the singer has been an inspiration
to her family.

Grace held the new microphone she got for Christmas, singing the
lyrics "Wake up and smile" and danced with her mom.

Kaercher said Grave is so brave for going out into the world every day
and her heart breaks every time Grace has a seizure.

"It's been a long road for us," Kaercher said. "We hope medical
marijuana will be a viable option for her."  
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MAP posted-by: Jo-D