Doctors didn’t think Jude Peters would make it to two weeks old.
This year he celebrated his fifth birthday.
During her pregnancy, Jude’s mum, Hannah Peters, was told that her son would have some form of skeletal dysplasia.
Two days after he was born Jude was diagnosed with rhizomelic chondrodysplasia punctata (RCDP), a rare developmental brain disorder and a form of dwarfism.
Hannah and her husband, Sully, were told to prepare for the worst. Jude wasn’t expected to live longer than a couple of weeks.
He underwent multiple surgeries and had to be fed through a tube.
But somehow, he continues to survive. He’s now five years old.
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.’
What is RCDP?
Rhizomelic chondrodysplasia punctata (RCDP) is a form of dwarfism and a rare, terminal metabolic genetic disorder.
The main features of RCDP include skeletal abnormalities, distinctive facial features, intellectual disability and respiratory problems.
Statistics say that 60% of children with RCDP don’t make it to their first birthday and 30% don’t live to their second birthday.
RCDP is a form of dwarfism and while achondroplasia causes mainly skeletal abnormalities, this form affects children’s neurological system, respiratory system and digestive system as well as their skeletal deformities.
Despite the struggles he faces, Jude is a happy child who’s constantly smiling and loves meeting new people.
His parents have found support through an organisation called RhizoKids. They also share Jude’s story online on Facebook and Instagram.
‘Rhizomelic chondrodysplasia punctata is a condition that impairs the normal development of many parts of the body,’ explains Hannah.
‘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 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.
‘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 shows 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.’
Jude’s parents will do whatever it takes to keep their child happy, despite all his health concerns.
His condition means he catches viruses very easily, along with affecting his neurological system, respiratory system and digestive system as well as their skeletal deformities.
‘We hope that Jude will continue to live a happy life,’ says Hannah. ‘We work hard to keep him safe.
‘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.’
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