Brave Little Warrior
Organized by: Hannah Peters
Update on our trip to Delaware
March 10, 2017
Jude was born with a rare and lethal form of dwarfism called Rhizomelic Chondrodysplasia Punctata (RCDP). There are only 54 cases diagnosed worldwide.
We were told Jude wouldn't make it two weeks and he is now 19 months old! Jude is a fighter and fights hard every single day.
All of the RCDP children are fighters.
Let me tell you a little about Jude.
Jude 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, requires oxygen and his all around medical routine is pretty vigorous. Jude still has many surgeries and treatments in his future.
The FDA is working on the approval of a drug that they think could be a possible cure. But we need funding and in order to get that, we need to make people aware of RCDP. We have high hopes that the clinical trial for this new drug could start the beginning of 2016!
We have been desperately seeking out and fighting for a national platform to raise awareness and funds for research and while we have succeeded in getting their story in the New York Times and several other news outlets, it's only the beginning. We are still in this fight. Will you help us? You can share on Facebook, Instagram, Twitter or even word of mouth. You could help us save these precious children by just a simple share.
Here are our hashtags we use
#HOPEforRCDP #RCDP #judestribe #bravelittlewarrior #prayforjude
Thank you for all of your support!
-Hannah (Jude's mama)