HOPE is EVERYTHING 

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.
Jeremiah 29:11

 

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/



  

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33 thoughts on “HOPE is EVERYTHING 

  1. Jude is so precious, and you are such a wonderful Mother! I pray that a cure will come soon so that children can be cured from this. The Lord is watching over you! Blessings!

    • Dear Hannah
      Please continue your fight against RCDP. I thank you for making us aware of this condition. It’s easy for those of us not touched by this to close our eyes and pretend someone else will fight, someone else will find a cure. Without your informative journals, I would not have known of this. Please continue to fight for Jude and give us posts we can share so these beautiful, incredibly courageous children’s lives can be enriched and their pain be controlled. Jude is very special to those of us who follow you. Thank you. God certainly made the right choice when he made you Jude’s mother. I wish you and your family health and happiness, always!

  2. Your story is inspiring. Never quit, never give up hope. You make mothers everywhere proud with every single thing you do to fight for Jude. Thank you for sharing your story with the world. You are brave and strong, and you’re doing the right thing. Keep fighting the good fight.

  3. Dear Hannah,   I ‘m without voice when I read your letter. I can tell that I follow Jude for more than one year now, and you are doing an exceptionnal work for all these children. You did more than the American medecine for RCDP. you are full of courage, energy and I have a big admiration for you.   Your little Jude is such a wonderder boy, his smile is lightning my day every single day.   I ‘m french and I do all the things I can do to help you. I even post to the Carolina Panthers the post you told.   I thank you so much for this email, because I feel like helping a little bit in this fight.   I love you and your family so much.   Big hugs and a kiss to Little Jude .   Marie         > Message du 05/02/16 18:26 > De : “Raising Jude” > A : grimaldi.marierose@orange.fr > Copie à : > Objet : [New post] HOPE is EVERYTHING  > >WordPress.com

    hannahkatelynpeters posted: “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”

  4. I will always share your precious Jude because I have my own war to fight my grandson has autism he is 16 now when he was little everyone thought how cute and looked at him with pity we don’t want your pity we want understanding excepting and a cure God gives these special babies to those who will love them and fight for them baby Jude is a gift to you so fight for what he needs because no one else will take every photo you can of every memory and mark it with love post and share as much as you can I can only say I believe you are wonderful parents and I thank you for sharing every moment with us love your family
    Mary kaiser

  5. Hannah
    I have followed Jude for months now..You, Jude your whole family is an inspiration.
    God have you Jude because he knew you would love him unconditionally.
    Jude is beautiful and brave.
    It saddens me that he has gone through so much in his short life.
    Keep hoping praying and sharing as we will do following him.
    God has great plans for that little boy.

  6. We will march on with you sister!! Hold on to hope, hold on to your faith, and keep pounding!! We love Jude, we love you, we love dad, grandma, grandpa, aunties, uncles, and all those who shout loud for his voice to be heard!!! God bless your family!!

  7. This post is so powerful! I don’t have an instagram page, but my 15 year old does, so I started following you from his just so I can hear how Jude is doing. I loved the videos of him laughing. You are one strong and amazing Mommy. And Jude is one very cute little boy. You keeping fighting for him and raising your voice for awareness. If you want to post pictures of him every hour, go right ahead! Your love is passionate just like all Mommies love should be for their children! Your pictures speak a thousand words. Keep them coming!

  8. I started following Jude’s story on Go Shout Love. He is precious and adorable and I just want to hug and squeeze him. You keep fighting momma, you keep praying, let your voice be heard. Prayers for sweet Jude and your amazing family. God hears all our whispers.

  9. Hannah, you go girl!!!! If others don’t want to join your fight then you don’t need them. People never know what they would do if it was their child so you do what is right for you. When you face God I know he will say “Well done my good and faithful servant, you did well with the gifts I gave you”!!!! And that Hannah is all you have to concern yourself with. Love and prayers sent your way.

  10. Keep on posting! No, I don’t read or share every post. YES, I do PRAY every time I see his sweet face. As an older person with a chronic illness ,taking care of a husband with a long term terminal illness, on a tight budget, we can’t give money, but we know the power of prayer and a loving God. God bless you! God bless little Jude and all those fighting the good fight for him and with him.

  11. As for the doctor’s comment about him not seeing 70, only God knows how long He will leave him here with us. God does perform miracles and we need to believe that. I have a grandson who was born with a congenital heart defect. A doctor told my daughter he hated to see her put so much money in something and not have anything in the end. Well he had 5 heart surgeries until he was 3 years old and he will turn 26 in July of this year. His heart was reconstructed and God has left him with us all these years. He is doing great a very caring and compassionate young man. He has a BIG heart even though it’s not perfect. We should never underestimate the power of God. We had many prayers going up for him and that’s another thing. God does answer prayer. So hang in there because he is in God’s hands and He will take care of him. If He brings you to it He will see you through it. I love seeing the posts of how Jude is doing. He is one tough little warrior and I couldn’t love him more if he was my own.

  12. My heart breaks for you all. I pray for you all and hope to help spread awareness. May God bless your little warriors & have mercy on them all. May his mercy come in the form of a cure. May baby Jude continue to defy odds, exceeding 70 years old. Don’t ever give up Hannah! As a momma, we will always fight for our babies. I believe in you. I believe in Jude!

  13. I don’t know you, but have been following Jude’s story since shortly after he was born, when my cousin told me about you. Since then, as I raised my own little boys, you and Jude have been on my heart.
    When my youngest was sick in the hospital last month, I thought about yours and Jude’s strength. When I do laundry, I think about your most recent post on Jude, and either pray for the current circumstance or praise God for another small victory. When I look at my own boys growing, I think about you and what Jude’s prognosis must be.
    You are an amazing mom and your hope inspires me. Praying for you always, trusting that God can do exceedingly more than we can ever expect.

  14. I’m so glad you are diligent in posting not only about Jude but others as well struggling with RCDP. Jude is so strong and he was blessed with parents who fight for him no matter what. You guys are not alone . There are many people following Jude who truly LOVE him and are praying for him to continue to beat the odds! Much love and hugs from Canada

  15. Beautiful words from your heart Hannah. You and your family are doing what you have to do for Jude and the other little ones with RCDP. You are doing and awesome job. Those of us in the “tribe” are behind you 100% what ever you need we will do it. I live I Harrisbug and would love to meet Jude and your family one day. God is in charge and we are here on earth to do what we can for others. Love and prayers for you and your whole family.

  16. Hannah, I don’t follow Jude and you along with your supportive family because I just wanted to see how cute Jude is, or how his smile brightens my day (even though it often does). I WANT Jude in my feed because I want to follow his & your journey, and to mark “Like” as a sign of solidarity with you.
    God has already used your original early posts, and then Jude’s early life to begin to challenge me, to return to my walk of faith.
    From here on out it is my turn to support, pray for, encourage, and periodically share Jude’s progress and challenges with my circle of friends.
    Your true friends will be faithful to you, no matter. You fight on. Only you and the other parents know what it is like. And unless you all speak on behalf of your precious warriors, no one else will.
    I will not tire of your efforts. In fact, in Jesus’ name, I have only admiration and respect. Carry on. Many of us are with you!!

  17. We are with you. We pray daily for Jude and several others noq we have added. Blake,kasin and charlie.
    Even my daughters first grade class pray daily for miriclea for these guys. We rejoice and cry over every victory and set back.
    We are with you even on the other side of the world

  18. Jude is a beautiful child. When I held him at your grandmother Delano’s last year, I lost my heart to him. I defy anyone to find fault with what you or your family do to make things better for him You are very amazing people, good Christians, good loving parents and grandparents and family members. You keep posting. I love all of it. Roberta Phillips

  19. I pray as much for you, Hannah and your husband, as I pray for little Jude. God bless your family! Head up dear and keep pounding! Im sending lots of love your way I pray you can feel it! (((Hug)))

  20. you and your family have all the prayers from my family to yours . Our grandson i believe had the same thing he did not make it . This hits so close to home for us . Youre such a wonderful mom and God has chosen you for a reason.Jude you just hang in there young man .. May Gods blessings pour upon you .

  21. Hannah, you are doing a marvelous job raising your baby! He has the sweetest smile and that comes from the love he gets from his family. No one will live forever and we don’t know how long any of us have on earth,
    but we all came with a purpose and deserve the best that can be offered. God also doesn’t give just any baby to any woman. He gives the special ones to tiger moms who will fight to the end for them. Just stay strong and keep doing what you do best and that is loving Jude.

  22. I share the biggest part of your post. Also, prayer for Jude daily. You a very brave Mom, your raising awareness. I would do the same thing. I wish you and your family many blessings in the future.

  23. Those who wait for the Lord will gain new strength, they will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary! May God continue to give you strength to carry on and fight the fight! We are all with you and your family Hannah for as long as you need us. You and Jude and your whole family are an inspiration to me and I’m sure many others. I look forward daily to your posts and Jude’s smile. Keep them coming. God Bless you all. Susan Cassel Peru, Indiana

  24. As a friend of Tommy and Delano, I have followed Jude since his birth. His journey has been amazing, because he has two strong warriors blazing a path for him every day. On top of that, your family and friends have been there as a source of support and encouragement. God made Jude for a specific reason, only known to him. In doing so, a tribe was formed and a bond was forged to pray for the brave little warrior who we have all grown to love. Each day, I look for your posts. If I do not find them in my feed, I go look for them. I pray for Jude daily. For the individuals that have fallen by the wayside, it is their loss. Very seldom do people get a glimpse of true courage. Even more rare, is the ability to do it on a daily basis. That is where God’s grace takes over and unconditional love is on full display. I believe the life you are living is fulfilling God’s will. ✝

  25. Hannah, I can’t even imagine your daily life. I do know that God has given you and your husband supernatural strength to fight this fight with and for Jude. Your posts made me aware of something I knew nothing about. Your posts have made Jude America’s baby. The tenderness I see is a love deeper than most. Keep posting. Several people follow them now from my fb friends. Prayers are being lifted and you are being loved, even on days you don’t feel it. Bless you!

  26. Jude’s expiration date is EXACTLY the same as ours Hannah. No one knows it except God! So we fight! Together. Don’t ever question what you do in the name of the Lord. You are making changes in all of our lives that you cannot see. But the Lord does. He knows your heart and created it for this very moment. Follow it. Do what it tells you to do and you can’t go wrong. From time to time, you will meet resistance. Go around it. Climb over it. Crawl under it. Your supporters will be behind you every step of the way. You are an Indomitable Leader. Love and hugs to you kid. You’re the bestest. ❤

  27. I just saw your beautiful little baby for the first time today! I’m now a follower! My niece also has a fatal disease, (Alexander’s), and I’ll tell ya – these kids are FIGHTERS!I promise not to ever think you post too much, and I will ALWAYS be willing to share your posts! Awareness is key to finding cures for these precious little ones! God bless you and your family! Love – another fighter in your corner, precious Jude!

  28. Excuse my “french” but if you lose “friends” because you post a lot about Jude, then screw them, they are not “friends”. Jude has the right to live a happy and healthy life along with all the other children suffering from this diease. Nothing can be done about it if it isn’t out there and making people aware, if people can’t handle it they simply don’t have to look or read about it. You keep doing what your doing!!!

  29. In my opinion you could never post too often about your sweet precious Jude. He has touched so many lives. More than you will ever know.
    Please know I pray for Jude and your family every day.
    My husband and I have three grown children. Our youngest is 22 and she has acondroplasia.

    You both are doing a wonderful job. Keep up the fight.

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