Rayland Camp has Rhizomelic Chondrodysplasia Punctata Type 1 for short RCDP. RCDP is a terminal form of dwarfism. There are about 53 cases known world wide. Most studies say that most children won't live past 2 years of age. These children do not walk or talk but do show emotions, such as being happy or sad. They all have feeding tubes (gtubes) and some have heart troubles. Rayland has a hole in his heart (ASD). Children with RCDP have short upper arms, short upper legs, stippling on his bones (small holes) contratures, cataracts, and hearing loss. Any sickness such as rsv pneumonia and even a common cold can be deadly. Rayland was in the hospital 2 times for pneumonia August 20th 2013 he was air lifted to Shands on a vent. We came home September 24th 2013. Then feb 10th 2015 he was air lifted to Shands and we came home March 14th 2015. He has had 32 hospital stays in pensacola and another 11 here in Gainesville. These children gettin ill can be fatal to them. RCDP children as you can imagine need around the clock care. Rayland has occupational therapy, physical therapy, and speech therapy for feeding troubles. For Rayland we travel to Gainsville to Shands Hospital and as well as to Tampa to Shiners Hospital. These places are where his specialists are at for his bones and for his eyes. Here at home he sees his physical therapist, occupational therapist, neurologist, ENT, regular pediatrician and GI doctor.
We need to raise awareness about this very rare condition (RCDP). We desperately are seeking donors for research to find a cure. Pharmaceutical companies aren't interested in investing in a trial for only 53 children because there is very little money in it for them. We need to find a cure!
Here are a few links on Raylands story as well as his Facebook page.
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