Finding treatment for Jj

We're finding ourselves in a situation we never thought we would be in. We love our son so much and want to do everything possible to help him. Our little boy JJ D'Angelo has been on a journey of overcoming impossible odds since day one of his short life. He was born at 37 weeks and was rushed to an emergency C-section and died during the delivery. Jj was without oxygen and heartbeat for several minutes and required resuscitation.  He was eventually transferred to All Children’s and we spent a couple of weeks in the NICU. We did genetic testing and an MRI at birth which showed no abnormalities, we were certain his global developmental delay was solely from his birth. We continued to search for answers at Boston Children's Hospital and several other specialists. At 18 months his MRI's showed white matter on his brain. We spent countless hours studying to be cerebral palsy and brain injury recovery experts for our little warrior. He has been in every traditional and alternative therapy we can afford or our insurance would cover: pt, ot, speech, hippo therapy, adjustments, acupuncture, 120 rounds of hyperbaric oxygen treatment, a Thera suit intensive program, an home neural developmental program, cranial sacral therapy, a strict gaps diet, music therapy, aqua therapy and experimented with mostly natural and safe biomedical treatments. We have seen slow progression and strides in our son for four years but decided to do more genetic testing. We just found out he has an extremely rare neuro developmental disorder called CHAMP1. There is currently a population of 7.3 billion people, our world was rocked to find out our miracle son is 1 of 38 people in the whole wide world with this condition. There are no known treatments or cures.  Our prayer and hope is that through our journey and fight we will be part of finding appropriate treatments to lessen the effects and improve quality of life.  The CHAMP 1 is a deletion that stops the function of a protein that is important neurological function and development. My husband and I now know our God given purpose on earth is to help our son and others with this disorder. We have contacted the other families, the founders of the disease and doctors all over the globe. Their is little research and knowledge of the genetic mutation and only a few specialists looking into it. They don’t know why it has such a grim impact in the children. There are specialists at Duke University that are willing to investigate, with the goal of a targeted treatment. The costs associated with putting a team together are beyond what we could have imagined.  To pay for the salary of a post doctorate and technician, including animal models costs and supplies was quoted at 150,000 per year with a minimum of a 3 year commitment. CRAZY. We are seeking grants and help but giving the rarity of the disease it’s hard to draw interest and right now a go fund me is our only option. We are going to continue to seek treatments. If you are lucky to have met our boy you know he loves to pray, listen to worship music, and is the sweetest, most loving little fighter. We are creating a blog where you continue to follow my sons journey, pray, see Jj's advancements, and ultimately advancements for the disorder CHAMP1 itself.  We know God knit him perfectly together in my womb and I do believe god has a lot more for my son. We are completely humbled asking for prayers,  generous donations, and if your business or job could help fundraise we would be forever indebted.  We also ask you share so we can spread awareness of Champ 1 and help us raise money to get our son treatment that he needs and for the 38 other families who are still looking for answers for this rare unknown neural  developmental disorder. We are completely grateful in advance and are expected God to move mountains in our and other CHAMP families lives. Please share and contact us if you can help in anyway or get involved in any capacity. God bless.