Post by Jodie, Samantha's Mom
(NOTE: this fund-raising page, has been updated for current needs, the first $1700 stated raised is from the last fundraiser, so that funding went to other needs and is not part of this trips funding. I couldn't figure out how to restart the total. working on fixing that so it is current)
My daughter Samantha was born with static encephalopathy, cerebral palsy, oral motor apraxia, an irregular chromosome string with a huge duplication, asthma, gerd, learning disabilities, sleep apnea and other health issues. As a baby she grew really slowly and had a diagnosis of failure to thrive, and was delayed in all of her physical abilities. She had many doctors, testing, and therapies. As time went on we adjusted and she learned things, even if that process was and is slower than others.
Now she is a beautiful 17yr old, kind and caring teenager. Biologically she is 17, but because of the delays and static encephalopathy she is more like an 11yr old. Within this last year she has had new medical issues emerging. The doctors believe these issues stem from the genetic abnormalities. Unfortunately her genetic duplications are rare and unstudied. So there is little at this point that we know and have to try and deal with stuff as it appears. She has episodes where she loses time and what is going on around her, leaving her confused and unsure what just happened.
The neurologists has now diagnosed her with autonomic issues. We are working on trying to get her a lightweight cooling vest, because she doesn't sweat and her body doesn't regulate its temperature well, putting her at risk from the heat and the cold, like hypothermia. She been dealing with vertigo, migraines, nausea, abdominal pain, all over pain, sensory issues, and mental neurological issues more.
We recently found out she has bile gastritis on top of the GERD. She has been having a lot of trouble off & on with eating and getting enough nutrition. She is on several different high calorie nutrition drinks & 4 different meds just for this. If she keeps losing weight and not getting enough nutrition, there are a couple of surgeries or feeding tubes options they may try if needed. Autonomic issues cover the GI tract also, and other issues she has I stated above. So at the hospital she will be seeing many doctors. She will be seeing an autonomic neurologist, gastroenterologist, cardiologists, sleep specialist, and geneticist.
The Children's Hospital pediatric neurogastroenterology, motility and autonomic disorders program has one of the few state-of-the-art pediatric autonomic laboratories in the country equipped to help diagnose children with autonomic disorders. We live in North Carolina and this is very far and we need to stay for a week. We need to raise money for air fare and lodging. There will also be many new bills adding to my current medical debt. But she needs this and hopefully they can help her more. Giving us a better diagnosis for the genetic & other issues. So we can know how to medically and emotionally help her in the future.
Because of her static encephalopathy and learning disabilities, Samantha is delayed and has to attend some therapies and counseling. Psychologically there is a lot to deal with because of the static encephalopathy, learning disabilities & oral motor apraxia. Any help we can get to make things better and allow her to deal with daily life issues and situations would be great. If we can get a better diagnosis and know how to help treat some of the medical issues that would be wonderful. We just want her to be as happy and healthy as she can be. To live the best she can later in life as a productive member in our society.
This is the best I can do to sum up the issues without going on for many more pages. A child with disabilities needs many services and it can be overwhelming financially, no matter how much you do to keep up with it. I thank you so much for taking the time to read some of our story. If you can donate to our fund to help Samantha get the continuing care that she needs we thank you sooooo much. Sharing the link to this page, so others can see it is also a great help. Thank you
Samantha's Facebook page
Samantha's page to donate