He was never expected to make it past two weeks old.
But five years later, Jude Peters is thriving, stunning doctors as he hits milestone after milestone.
His parents Hannah and Sully were told to prepare for the worst early on in the pregnancy.
Their obstetrician in Charlotte, North Carolina, said scans suggested their baby would have some form of skeletal dysplasia, but it wasn’t clear to what extent.
Two days after he was born, he was diagnosed with a rare developmental brain disorder, which causes dwarfism, rhizomelic chondrodysplasia punctata (RCDP).
Sixty percent of ‘Rhizo kids’ don’t make it to their first birthday, and another 30 percent don’t make it to two. The condition impacts the development of their lungs, brain and skeleton so severely that it often proves fatal. Those who survive cannot eat, talk and walk.
Doctors said they would only have a couple of weeks with him, at best, but they would try to operate, putting in a feeding tube.
Jude Peters was diagnosed with RCDP, a rare brain developmental disorder, at two days old
Doctors told Sully and Hannah (pictured) to prepare for the worst; that he wouldn’t live two weeks
After multiple surgeries, Jude was stable, and could have home treatment
Jude celebrated his fifth birthday in hospital, since he recently contracted an infection
To their astonishment, he made it to one, then two, then three, four, and this year, on April 17, he turned five.
He spent the day in hospital, surround by balloons and toys, since he had recently contracted an infection.
But today, on national RCDP day, his parents are celebrating how far he has come.
‘He has defied the odds and has continued to be a fighter. Our miracle boy,’ Hannah said.
‘Regardless of all the medical challenges he has faced and still faces, Jude is filled with immense joy. He loves meeting new people and smiles every single day.’
Jude is wheelchair-bound and, due to his spinal stenosis, his joints are contracted, meaning he needs weekly therapy, which he loves and looks forward to.
He will inevitably face more operations, and they are always trying to learn about new treatments, attending an RCDP medical conference every year in Alabama, where they can meet with other families and medical experts.
Getting his treatment plan in place has been a years-long endeavor.
Jude is wheelchair-bound and, due to his spinal stenosis, his joints are contracted, meaning he needs weekly therapy, which he loves and looks forward to
He will inevitably face more operations, and they are always trying to learn about new treatments, attending an RCDP medical conference every year in Alabama, where they can meet with other families and medical experts
From the moment Hannah found out she had a ‘high-risk pregnancy’ she started blogging about it, not sure what it meant but sharing her discoveries publicly as she went on
When he was first diagnosed, few doctors in their area knew anything about his rare condition.
Hannah and Sully traveled to Wilmington, Delaware, to take Jude to AI DuPont Children’s Hospital, which has a specialist unit for RCDP children.
That’s where they got the official diagnosis, and they could begin etching out their plans.
‘As soon as he was diagnosed, we posted on Little People of America’s Facebook page asking if anyone had heard of this condition. Pretty quickly we had families that have children with this diagnosis reaching out,’ Hannah said.
‘We were devastated when Jude was diagnosed.
‘The hardest part to cope with was hearing about the lifespan for RCDP kids, and also knowing that Jude would never be able to walk, talk or eat.
‘It’s heartbreaking for any parent. These past five years have had their ups and downs.
‘However, we stand together with hope and faith and Jude has come such a long way.’
From the moment Hannah found out she had a ‘high-risk pregnancy’ she started blogging about it, not sure what it meant but sharing her discoveries publicly as she went on.
Hannah said the hardest part to cope with was hearing about the lifespan for RCDP kids, and also knowing that Jude would never be able to walk, talk or eat
These past five years have had their ups and downs
‘Awareness is very important for children with rare diseases and we work hard at raising awareness for Jude and his Rhizo brothers and sisters,’ Hannah said.
‘We frequently hear that Jude’s story has inspired people and brought them joy and given them hope in their own situations. We feel blessed that Jude’s story has had such a positive impact. Our hope in sharing our story is that everyone can have joy like Jude.’
As for Jude, he is better than any medic predicted. He is constantly giggling and loves dancing.
‘Overall, we have joy. Jude has learned to communicate and show us love in his own special and beautiful way.
Other kids are curious but are very drawn to Jude because of his big smile and joyful attitude. They are surprised that he is so small for a five-year-old
‘Jude is a very loved little boy; we have been overwhelmed with the love, prayers and support from our friends, family, local press, community and online followers that we call Jude’s Tribe.
‘We hope that Jude will continue to live a happy life. Due to his compromised respiratory system, we have to be very careful with Jude because he catches viruses very easily. We work hard to keep him safe.
‘Other kids are curious but are very drawn to Jude because of his big smile and joyful attitude. They are surprised that he is so small for a five-year-old.
‘There is always hope. Live one day at a time. Never take anything for granted. Always find the joy in everything.
‘Jude’s favorite thing is dancing. Always take the time to live in the moment and make time for dancing. Never give up.’
