Fighting for Jude 

Hello,
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! 
Hannah Peters 
#FIGHTINGforJUDE #fightingforacause #HOPEisEVERYTHING #HOPEforRCDP #judestribe #judesjourney #prayforjude #rhizowarrior #superjude #bravejude 
  

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4 thoughts on “Fighting for Jude 

  1. Hannah I would contact everyone you said and more! Have us contact them as well! Phone calls, emails, media inquiries all to the governor, representatives and senators DAILY should right this wrong! No one deserves to suffer in this country when the resources are available. I am really good at bothering them via email so let me see what contact numbers I can find. My fight was different in nature but for my now precious twin boys. Your tribe will not fail you Jude!

  2. He is on our church,Christ Church Anglican of Wakulla, prayer list and has been long before he was born. We love and pray for him daily. I pray that the help you need will be available soon. I got to hold him when you were at your grandmother Delano’s home and I will never get over the love I felt for him. Your entire family is so brave and full of God’s spirit. Jude is so adorable, who could not love that precious little boy and pray that he has all the help he needs. I will share this informative message with everyone that I know. Your friend in Christ, Roberta Phillips

    Sent from my iPad

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  3. Your county (not sure if you are in Mecklenburg or Union?) should have a Local Interagency Coordinating Council. Their job is to monitor systems serving young children with disabilities for gaps in services, and their members should include representatives from all the major local agencies serving young children – exactly the people who can help you find where the failure in the system is and how the group can help advocate for change. If you can’t find a contact for the group through googling, call your CDSA or another early intervention group – they should be able to give you the contact info. If you still can’t find it, email me and I’ll help you – I’m only a few counties away.

    Parents of children with disabilities also serve on this committee; you may want to inquire about joining them as an advocate for other children and families. If you do, it’s important to remember that this is a group that considers the needs of all children with disabilities in the community, and advocates for systems change; it’s not simply a place for a single voice to be heard. I served on my county’s LICC for 16 years as a parent representative and I often saw parents who were only there to voice their own frustration about the barriers they themselves were encountering. The most effective parents were ones who could see the bigger picture and think beyond their own family’s immediate needs, those who are willing to be there, listen, understand the system, and put in the work to facilitate change. Parents can be EXTREMELY effective advocates within their communities!

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