There are numerous points of interest in this article and, dare we say, salient lessons for us all. It's heart breaking and encouraging at the same time. The child has endured a life of daily collapsing seizures for nearly all of her 15 years. It's impossible to quantify her silent suffering and, yet, she smiles -- though her eyes tell her story. The bottom line is the human family is opening its eyes and returning to the cannabis plant, step by step, to address their maladies after over a century of lies that served the few to the detriment of the many.
Mother looks to medical marijuana to cure daughter's seizures
By Michilea Patterson
The Mercury News
February 10, 2014,
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 has 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 from being helped.
Kaercher said she learned of the possible benefits of medical marijuana to Grace after the media attention on 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 the family 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 as she is now just under 5 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 she 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, R-Berks/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 3 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. Folmer 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 by the Food and Drug Administration which creates roadblocks to research of 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.
Mother looks to medical marijuana to cure daughter's seizures
By Michilea Patterson
The Mercury News
February 10, 2014,
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 has 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 from being helped.
Kaercher said she learned of the possible benefits of medical marijuana to Grace after the media attention on 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 the family 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 as she is now just under 5 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 she 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, R-Berks/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 3 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. Folmer 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 by the Food and Drug Administration which creates roadblocks to research of 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.
