My name is Hannah Peters and this is my wonderful son, “Jude Sullivan Peters.” We currently live in Charlotte, NC.
Please let me take a little time to share with you about Jude.
Jude was born with a very rare and lethal form of dwarfism called “Rhizomelic Chondrodysplasia Punctata” (RCDP). Currently, there are less than 100 cases diagnosed worldwide.
RCDP is a condition that impairs the normal development of many parts of the human body. The major features of this disorder include: skeletal abnormalities, distinctive facial features, intellectual disabilities, and respiratory problems.
RCDP is also characterized by shortening of the bones in the upper arms and thighs (Rhizomelia). Affected individuals also have a specific bone abnormality called (Chondrodysplasia Punctata), which affects the growth of the long bones and can be seen on x-rays. People with RCDP often develop joint deformities (contractures) that make their joints stiff and painful as well.
RCDP is associated with significantly delayed development and severe intellectual disabilities. Most children with this condition do not achieve normal developmental milestones such as: sitting up, feeding themselves, or speaking in phrases. Affected infants grow much slower than other children their age, and many of these children have ongoing seizures. Recurrent respiratory infections and life-threatening breathing problems are also common.
Because of their severe health problems, most people with RCDP survive only into childhood. It is rare for affected children to live past the age of 10. However, a few individuals with milder forms of the condition have lived into early adulthood.”
When Jude was born we were told that he wouldn’t make it two weeks and he is now 2 years old! Jude is a fighter and fights hard every single day. In truth, all of the RCDP children are fighters!
Jude is currently in the emergency room awaiting admittance into the hospital for the second time this month because he has been battling two viruses for several days now. Two weeks ago Medicaid made the decision to discontinue coverage for Jude’s hospice care. We had a in home medical care team that was capable of giving Jude the care his complexities require. Since losing Jude’s care it has been scary to say the least! Sadly, Charlotte does not have a true pediatric palliative care program, so kids such as Jude fall into a place where they are penalized for surviving. However, Jude’s diagnosis HAS NOT CHANGED. He still continues to fight a lethal diagnosis, only now we feel stranded without the correct medical care and support that Jude needs on a regular basis, which again was being provided by his Hospice palliative care team.
In Jude’s short two years of life he has had five surgeries and several other medical procedures. He has six hours of therapy every week, he was born with cataracts in both eyes (which is why he wears the glasses), his hips and shoulders are out of place, all his joints are contracted, he eats by a feeding tube, he has spinal stenosis, spinal kyphosis, a spinal cord tether, requires oxygen due to apnea. and his all around medical routine is pretty vigorous. Without a miracle, Jude still has many surgeries and treatments in his future.
We are currently in a situation where we have no home care team and the programs that are available to us are simply not specialized enough to care adequately for someone like Jude. We are a family that believes in prayer, however we also believe in Jude receiving the best medical care available!
Therefore, we NEED the city of Charlotte to come up with a plan to have a true pediatric palliative care program where Jude and others needing specialized in home care can receive the medical support they require to overcome their challenges and to not be penalized for fighting and overcoming.
Will you please help us by sharing this post? I am sure that Jude is not the only child in the Charlotte/Concord area that is facing this type of issue. With the above said, I am not sure if I need to lobby the governor, representatives, the media, THE PRESIDENT or whomever! But I am a mom on a mission to give my child the best chance at fighting and the best quality of life that I possibly can. Jude and all the other beautiful children battling medical challenges deserve the best care possible!!!
Thanks for your help in this important matter!
#FIGHTINGforJUDE #fightingforacause #HOPEisEVERYTHING #HOPEforRCDP #judestribe #judesjourney #prayforjude #rhizowarrior #superjude #bravejude