By Liana Jacob
THIS SMILEY boy was born with a rare form of dwarfism and doctors didn’t think he would live longer than a few weeks – he proved them wrong and recently celebrated his FIFTH BIRTHDAY.
During her pregnancy, stay-at-home mum and caregiver, Hannah Peters (27) from North Carolina, USA, was told she had a high-risk pregnancy and was told in utero that her son, Jude (5) would have some form skeletal dysplasia.
Two days after he was born, he was diagnosed with rhizomelic chondrodysplasia punctata (RCDP), a rare developmental brain disorder. She and her husband, Sully, were told by doctors that they would only have a couple of weeks with him and to prepare for the worst.
But despite undergoing numerous surgeries, having to be fed through a tube and being wheelchair-bound, Jude has defied the odds living his best life with a smile and loves meeting new people.
In April 2019, Jude and his family celebrated his fifth birthday with balloons and streamers in the hospital.
“Jude was diagnosed with RCDP when he was only two days old. I had a high-risk pregnancy and we knew in utero that he would have some form of skeletal dysplasia,” Hannah said.
“When they diagnosed him, they told us we would only have a couple weeks with him. He has defied the odds and has continued to be a fighter. Our miracle boy turned five on April 17th.
“Jude was born with congenital cataracts in both eyes and had surgery at six and eight weeks to remove them. He is fully fed through his feeding tube that was surgically placed during the first month of his life.
“He has spinal stenosis, kyphosis and a tethered cord. His joints are contracted which requires him to need a lot of therapy. He gets weekly in-home therapy and he loves it; it makes him feel comfortable.
“Jude is wheelchair dependent, but 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.
“When Jude was first diagnosed there weren’t many local doctors that knew anything about his rare condition.
“We travelled to Wilmington Delaware to take Jude to AI DuPont Children’s Hospital where there are specialists that have treated many RCDP children.
“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.
“Through them we were connected to an organisation called RhizoKids. We go to a medical conference every year in July at Children’s Harbor in Alexander City, Alabama where we get to connect with other RCDP families.
“We get the chance to meet with and learn from several specialists and doctors from around the world. It’s an incredible experience.
“Rhizomelic chondrodysplasia punctata is a condition that impairs the normal development of many parts of the body.
“We were devastated when Jude was diagnosed with RCDP at two days old. However, we stand together with hope and faith and Jude has come such a long way.
“We have shared Jude’s story since the very beginning; I started blogging when Jude was diagnosed in utero with skeletal dysplasia.
“Awareness is very important for children with rare diseases and we work hard at raising awareness for Jude and his Rhizo brothers and sisters.”
The main features of RCDP include skeletal abnormalities, distinctive facial features, intellectual disability and respiratory problems. It is considered to be a terminal condition; statistics say that 60 per cent of children with RCDP don’t make it to their first birthday and 30 per cent don’t live to their second birthday.
RCDP is a form of dwarfism and while achondroplasia causes mainly skeletal abnormalities, this form effects children’s neurological system, respiratory system and digestive system as well as their skeletal deformities.
May 31 marks National RCDP Awareness Day.
“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,” Hannah said.
“Such a disability is heart-breaking for any parent; these past five years have had their ups and downs. Overall, we have joy. Jude has learned to communicate and show us love in his own special and beautiful way.
“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 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.
“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.
“Many have affectionately referred to Jude as Brave Little Warrior since the very beginning. We call our local community of supporters and social media followers Jude’s Tribe and Jude’s tribe is the best tribe.
“There is always hope. Live one day at a time. Never take anything for granted. Always find the joy in everything.
“Jude’s favourite thing is dancing. Always take the time to live in the moment and make time for dancing. Never give up.”
For more information visit: https://www.instagram.com/hannahkatelyn/
Facebook: https://m.facebook.com/prayingforjudesullivanpeters/
