On April, 5 News told you about a baby that is battling an extremely rare disease. His name is Jude Peters. He and his family live in North Carolina, but they have ties rooting back to Upshur County.
Its been a tough year for the Peters family. Jude was diagnosed with RCDP, a rare genetic disorder that most of us have never even heard of.”It is considered a lethal form of dwarfism. There’s only 53 cases known right now worldwide,” said Hannah and Sullivan Peters, Jude’s parents.And Jude is one of those 53. Doctors had little hope that he would even be able to live outside of the womb, but just a few weeks ago, Jude hit a major milestone, by celebrating his first birthday, and proving that miracles do exist.”He wasn’t supposed to make it to his first birthday. It was really a huge celebration for us because he made it and he is doing really well,” said Peters.
Jude’s story is such a success that it has even went viral. But time is ticking for a cure and that’s the biggest problem. Finding funds for research is a struggle because of the small amount of people that this disease effects worldwide.
“Pharmaceutical companies are not wanting to jump on board for 53 children just because it’s such a rare diagnoses and we have no government grants, which is why, us as the families, we are the ones trying to raise all of the funds for this and we are the ones fighting for this,” said Peters.
But, the medical bills add up. The family has to travel to the Alfred I. Dupont Hospital for Children in Delaware every few months to help get Jude the treatment that he needs.”Problems also stem from his spine, so they do a lot of MRI’s. They’ve got him on hand splints to help him open his hands,” said Peters.But through it all, the family is determined to keep raising awareness.”Sometimes I feel like he is stronger than me and he is just a baby, but that is how all of these babies are. I’ve met a few of them and I’ve gotten to known their families online and they are all just such joyful, happy babies,” said Peters.
In the meantime, they look forward to cherishing every moment they can with little Jude.
If you would like to learn more, or donate to Jude’s cause, you can click here