RJ Trisomy 9 Syndrome

Our son Randy James was born July 9th 2019, he was born with not one but two rare conditions. He has Agenesis of the Corpus Callosum or AgCC which means the center of his brain is under developed. The Second thing he was born with is Trisomy 9 Mosaic Syndrome. It is an incredible rare genetic chromosome disease. There are only 1,200 people in the world who have this because most die either before birth or before they are 2 years old.  He has many specialist a Cardiologist, a Orthopaedic Specialist, a Neurologist, a Urologist, an Ophthalmologist, and a Geneticist. In his three months on this earth he has been to 15 specialist appointments. We have insurance however, the bills keep getting over whelming. One test from the Geneticist that he says he needs is 10,000. And our insurance is stating "Not medically Necessary" . This little miracle baby has fought this hard to get this far and we need the village to come together to help with the past and future medical bills. Because of how rare this is he falls through a lot of the cracks with assistance from federal and local assistance programs. Our little boy RJ is our world please help this miracle baby beat the odds and help us to get him the best medical help we can.