1p36 Deletion Support & Awareness is in the running for a $50,000 grant to insure that all children with 1p36 Deletion Syndrome get diagnosed and we need your help. Diagnosis means information and support for families, caregivers, medical providers and educators to help improve the lives of those with 1p36 Deletion Syndrome. Helping is simple, just vote three ways every day for 1p36 DSA! (click on blogspot link above for voting instructions)
As some of you know 1p36 deletion syndrome is very close to my heart. My son was diagnosed with 1p when he was 3 weeks old. It only made sense that this would be my first featured non profit.
My family has struggled for years to find the right help for Josh. We have moved from Maryland to Pennsylvania. Pennsylvania to Florida, and from Florida to North Carolina. All of these moves have been for Josh. We have depleted our bank account, sold our homes, left our family and friends, and have separated, just to give our child a fighting chance.
Josh will never be like the "typical person". However, he does deserve to reach his fullest potential. Whatever that may be. I could go on and on over the rejections that Josh has endured in his 8 years. It is overwhelming to have doctors, therapists, school, and clinics turn him away. There is not enough information about 1p out there, and because of this children like Josh suffer. I am speaking about our own experiences. We have gone to the extreme with moving so much. I am still wanting to move one last time, but as I stated before I have depleted my bank account, so for now we are stuck.
Some of the medical battles that my child faces are: epilepsy, scoliosis, kyphosis,nystagmys, strabismus,hypotonia,global developmental delay, and behavior issues. He is non ambulatory and non verbal. We fight because Josh is a smart little boy. With the right tools he should be able to communicate. He may never talk, but he should still be given the tools for signing or a communication device. He is very close to walking, but because he has behavior issues many therapists do not want to deal with him, so they decline therapy. Again, these are just a few things we go through.
We have met many wonderful people along the way. Our experiences haven't always been negative. However, I want good doctors, good therapists, and a good school for my child. I don't feel like I am asking for to much to find all of that in one area. I believe because we have moved so much I have had the opportunity to know what I want for him. I have seen it. Th worst decision I have made was to move out of South Florida. He did have a great school and therapy center there. I had friends, and we had families there that loved Josh. This time why we moved had nothing to do with Josh. I won't go into that
My point with this story is knowledge is power. If there was more information about 1p out there doctors, therapists, and schools would know better how to care for a child like mine. Be sure to click on the links to find out more information about 1p36 deletion syndrome.
Thank you for letting me share a small part of our story with you.