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Help Isabel Stomp GAN!

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Where did you get your beautiful curly hair from? 
This is a question that Isabel has been asked more times that any of us could count! We always answered with a simple "we don't know!". However, on 10/12/2017 we were told that Isabel's genetic test found a mutation on her GAN gene. With this news came a diagnoses of Giant Axonal Neuropathy (GAN) a fatal neurodegenerative disease that can cause paralysis, seizures, a gradual decline in mental function, and ultimately, death. It also causes curly hair.

We first noticed she was a bit clumsy as a 4/5 year old, and would fall down a lot. We chalked it up to her not being naturally athletic and didn't think twice about it. We enrolled her in gymnastics and dance classes at 3 years old and she managed to keep up with all of her classmates. The summer she was 5, I had bought her a pair of flip flops which she could not keep on her feet. I showed her how to curl her toes down to clench onto her shoe, but to my surprise she could not move her toes. At her doctors appointment no one was quite sure what to make of it, but we were told we could have her see a neurologist to rule anything serious out. There is only one pediatric neurologist in the state of Alaska and he was transferring offices at the time, so it took about 8 months to get in for an appointment. The neurologist noted that she did not have any reflexes, and that her feeling was reduced by about half. He suspected Charcot Marie Tooth (CMT) and we began the process of trying to get a genetic test covered by insurance. There were tests and things that had to be done first, before the lab work could be sent in. The initial test came back negative for CMT but based on her clinical exams they still felt that it fit. We were referred to a genetic counselor at the pediatric subspecialty clinic at Providence. They also felt CMT was a fit, but ordered an expanded genetic test. The results of this showed that both her father and I passed on a mutation of the GAN gene. 

We believe that Isabel has a slower progressing version of GAN since at 7 years old she is still walking unassisted, and doesn't require AFO's yet (braces for her ankles and feet). She has been a very active child, and that could also be helping to keep her symptoms at bay. 


Currently there is a clinical trial going on that is testing gene therapy for our kids. This therapy will help provide the missing protein gigaxonin to her central nervous system and hopefully prevent the respiratory failure that typically causes death. There is hope!


I struggled with wether or not to start this fundraiser because while our lives have become immensely different, nothing has actually changed since her diagnosis. She is still attending her dance classes, and doing her school work. She is still playing pretend with her sister and laughing with all of her body. She is happy and full of life! Her father and I, on the other hand are simply going through the motions of our lives, hoping that we can fake it till we make it. We are both trying to work and pay the bills as normal. Now there are all of these things we need to provide for our sweet baby: special supportive shoes, vitamins and supplements, and chiropractic visits etc. Amazingly the clinical trial will pay for Isabel and one parent to fly to Maryland for the initial exam, and if she were to be selected for the trial they would pay airfare and put us up in housing onsite, as well. If selected we would need to live in Maryland for 9 weeks. However, there are numerous other travel and medical expenses that we haven't even begun to imagine. Isabel is a spunky, silly, spirited 7 year old who has always impressed us with her ability to make up her mind to do something, and then amaze us all with her bravery and tenacity as she accomplishes what she set out to. We are hoping to continue to provide her with the happiest childhood that we can. We are asking for help to pay for the things she needs and appreciate everyone's support. 

This fundraiser had started as a way to raise money for Isabels service dog. We have been abundantly blessed with her in regards to a service dog, but other expenses continue to pile up. Donations made to this account will continue to go to things that will benefit Isabel and help her life be happy. Supplements, essential oils, physics therapy tools for our home, shoes that actually fit over her AFO’s (braces for her feet), clothing to keep her warm where she has poor circulation. There are so many hidden costs that have shown up this past year that we never imagine, and are not covered by insurance. I have also been unable to work as much as I need to take her to all her appointments and care for her. Your generous help is so appreciated!




The story of Isabel and Leo

Meet Isabel Kerr and her dog, Leonidas. Isabel wants to be a cowgirl, a baker and a policewoman when she grows up. (“But Mom, I think a policewoman may actually be too dangerous. I’m not sure about that.”) Leo, on the other hand, is a little more focused - he wants to be a Registered Service Dog. These two adorable dreamers are on a mission and they need your help.

Once upon a time, Isabel was skipping through seven-year-old life as just your average magical second grader with a halo of curls to help her make new friends. She had a fairy dancer big sister, a beautiful queen for a Mama and a Daddy who wore shining armor and drove a chariot taking food to the hungry.
Then in October of 2017, Isabel received a message that brought a shadow across her magical life. She was diagnosed with Giant Axonal Neuropathy, known more commonly by its acronym, GAN. Of course, it is such a rare disease that Isabel had never heard of GAN. It is worth noting that because genetic testing must be performed in order to reach a GAN diagnosis, there are thought to be many more undiagnosed cases. But for now, Isabel remains one of less than one hundred confirmed cases worldwide.

In the six months that followed Isabel’s diagnosis, the Kerr family went on an emotional roller coaster ride. They quickly scrambled to learn as much as they could about this rare disease and in this case, information did not alleviate fear. Do a quick internet search for GAN and you’ll read a terrifying story. Here’s a quote from the very first website that comes up on a Google search: “The signs and symptoms of giant axonal neuropathy generally begin in early childhood and get worse over time. Most affected individuals first have problems with walking. Later they may lose sensation, strength and reflexes in their limbs; experience difficulty coordinating movements (ataxia); and require wheelchair assistance. Visual and hearing problems may also occur. Many individuals with this condition have extremely kinky hair as compared to others in their family. As the disorder worsens, paralysis, seizures, and a gradual decline in mental function (dementia) can also occur. Most people with giant axonal neuropathy do not survive past their twenties.

That last sentence sucks the air out of your lungs and the magic out of life. Everything stops.





Except, even though you want it to, nothing actually stops. The days just keep rolling disrespectfully on by. Work emails pile up, your phone rings anyway and people start asking when you’re going to come back to real life and get on with things…… Time doesn’t care about magic. It just keeps passing.

So it becomes eventually evident that there must be a plan. A shred of hope must be found and a way forward must be mapped out. And sometimes, in those moments, you adopt a puppy off of Facebook because you need some joy in the darkness and because magical girls deserve a normal childhood even if it seems like normal no longer exists.



Enter Leonidas. You see his happy face up there in the photos above. As it turns out, Leo has some magic of his own to bring. His breeder said he was very calm as a puppy and that she thought he would be a good fit for two little girls. She couldn’t have been more right! As he’s grown, Leo has shown amazing maturity and empathy towards Isabel’s needs. He has been very calm, eager to learn and makes a quick study of any new tricks or tasks he’s taught. He was recently evaluated by a trainer and deemed a good candidate to learn how to be a service dog for Isabel. We couldn’t be more excited! Isabel is still walking - largely unassisted - but it can be tricky for her to run outside like her friends do or to walk in the ice and snow that covers the ground in her home state for 6-8 months of the year. It is these challenges that make a service dog seem like a good option, but unfortunately, that process typically takes a couple of years and requires funding in the neighborhood of thirty thousand dollars or more. If Leo can be trained to do the things Isabel will need, she’ll have a service dog much sooner and less expensively than would have been possible otherwise.



The Kerr family desperately wants to start training Leo to be Isabel’s service animal as soon as possible. He can be taught to wear a special harness with a handle that Isabel can use to help her balance, to brace her should she need it, and to help her up if she falls. Training could take 1-2 years at which point Isabel will likely need Leo’s aid very much. It would be difficult for a 10 year old to play outside in the snow with a walker, so we are hopeful that Leo will allow Isabel to hold onto her fun, carefree childhood for as long as possible.



Training Leo to be the service dog that Isabel needs will cost less than $8,000. This is a steep bargain in the world of service dogs but Isabel and Leo need your help to pay for his tuition. Please consider donating to their cause. You may donate through this GoFundMe page or by mailing a check to 
865 N Seward Meridian Pkwy #200
Wasilla AK 99654
C/O Tara Kerr

Isabel and Leo would also be very grateful for any assistance you can offer in spreading the word and sharing awareness about GAN. It is with grateful hearts that Isabel’s family watches her current mobility level. As we write this, Isabel is a happy, spunky, spirited 8 year old who doesn’t let anything slow her down. The fact that she can still walk is a blessing that has given us so much hope. Hope that she has a milder case of the disease. Hope that her progression will be very slow. Hope that she will continue to be able to ride her bike for years, to walk to the podium at her graduation, and even down the aisle at her wedding. Hope that a treatment, or even a cure will be found before she loses her mobility. Spreading the word about GAN can help by promoting more accurate diagnosis for suspected GAN patients, research to find treatments and cures, as well as funding for doctors and scientists to conduct studies. Help us get the word out! Follow and share Isabel’s story far and wide! Thank you from the bottom of our hearts.



https://m.facebook.com/IsabelslaysGAN/ 

https://instagram.com/p/Bh8PO6XHpf6/
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Donations 

  • Rachel Dodd
    • $50 
    • 5 yrs
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Fundraising team: Isabel Slays the Giant (2)

Lalia Bunn
Organizer
Raised $275 from 6 donations
Anchorage, AK
Gordon Kerr
Beneficiary
Tara Kerr
Team member
Raised $1,770 from 15 donations
This team raised $2,765 from 33 other donations.

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