First in this post let me say thank you to everyone who has been faithfully following Jude’s journey, sharing posts and doing everything to help us raise awareness for RCDP. We feel so much love and support and it means more to us than I could ever convey.
Molly Grantham with WBTV Charlotte local news followed us to Delaware to get coverage of Jude’s medical care he receives there from several specialists. She got footage from every appointment and procedure and interviewed the specialists who know most about RCDP. This is great because it really helps people to learn more about this diagnosis.
RCDP is a indeed a brutal diagnosis. It’s painful and scary and it comes with a lot of unknowns. Every single day we are taking on a fight for our child’s life. Everyday we are storming heaven and earth to do everything we possibly can for our Jude.
One of the doctors said in this video something that really stung me “He is not going to be 70, he probably won’t be a teenager”
We have known since the very beginning when he was first diagnosed that RCDP is a “lethal” diagnosis. But to hear him referring directly to my child in such a brutal sentence was hard to swallow and it sent shivers down my spine.
I’m going to open up and take a moment to be 100% brutally honest in hopes that it doesn’t send off offense but rather gives insight and encourages people to get behind such a worthy cause for these beautiful children.
If you are friends with me on Facebook and Instagram or follow Jude’s Facebook page, you obviously know that we post ALL THE TIME. We spend our every waking moment working at raising awareness for the genetic disorder that is dramatically altering our child in many ways.
I lose friends on social media all the time and a lot of the time its people I personally know. I have heard on more than one occasion comments about how we post a lot. I have asked people to share a post about Jude, another RCDP kid or something about Rhizokids with a “no” response or have been ignored. Because they only like sharing things that look nice on their feeds or they don’t like posting about the same thing over and over.
Please hear me out and don’t take this as judgement or condemnation. For my child and the other beautiful RCDP children I have come to love so dearly, I have a job to raise my voice as loud as I possibly can. I am on a mission, and it’s one that is not to be taken lightly.
Yes, I have faith in a wonderful Heavenly Father that has so graciously extended his hand to us throughout this entire journey. Even in my human flesh when I have questioned or taken offense, he has remained loving and faithful.
I have hope and I am believing with everything I am for what earthly man sees as impossible to be possible.
When I first heard that sentence, I wanted to rewind it and somehow delete it so that no one else could hear those words. But I have come to realize that it was something I actually needed to hear. It motivated me to push even harder. To use all my strength to invade heaven and earth to fight for my son and all of these beautiful babies who have no voice to fight with on their own.
Posts about RCDP aren’t always the beautiful and hope filled ones. Sometimes they are raw, scary and even hard to see. But this is our reality, we are in a fight for LIFE. And even though I do believe in miracles and I do have hope, I also know that God has trusted me with this mission. He has trusted that I will fight until I find victory.
I will do any earthly thing I possibly can in my human nature to fight. I will continue to bombard this world with the words RHIZOMELIC CHONDRODYSPLASIA PUNCTATA.
These children are facing terrifying battles and it is very very hard to watch. It’s not all the “feel good” stories at all times.
But these children are also some of the strongest human beings you will ever meet. Their strengths is incredible and inspiring. Makes you feel like no matter that you’re facing, you will make it.
Most RCDP children cannot talk or they only can very little. But they do fight, they love and they strive to do the impossible.
Let me remind you, they said Jude would live two weeks and here shortly we will be celebrating 2 YEARS.
I just want to be clear on why I send thousands of messages and emails looking for help with awareness. This is our reality. This is why we post thousands of posts and start social media campaigns.
Our warriors need us to be warriors along with them. We are marching this battle for them.
As I said in the interview, they are not sure the clinical trial will do everything we hope, but they know it will do something and something to us is EVERYTHING #HOPEisEVERYTHING
This isn’t me saying “to fight with us, you must share every single post” that is not what I am trying to get across at all. I am voicing why we do what we do. And I am trying to shed light on the reality of what these beautiful, sweet and innocent babies live with.
Every post, prayer, ounce of hope, encouragement and love matters. Our community feels all the support from so many. We can’t do this without you. We need an army, we need a tribe!
Let’s join together and fight this fight, with unending hope in our hearts and our heads held high.
Let’s lift up our voices for our warriors who can’t, let’s hold up their fragile arms and soldier on with them.
Let’s shout loud and clear for all be nations to hear. They have fought long and hard and deserve HOPE and a cure.
Let’s run this race until we reach the end where victory is won and RCDP is done.
They fill our hearts with immense joy, love and peace. So let’s give back to them what they give so freely.
I HAVE HOPE. We have hope. I will hold onto that. I will continue this fight. #HOPEforRCDP
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
To see Jude’s recent news stories and extra footage from his WBTV story, you can find them on Jude’s Facebook page https://www.facebook.com/prayingforjudesullivanpeters/