An Open Letter to RCDP 

Dear RCDP,

 

 

I am writing this to you as I lay upstairs with a mask on, quarantined away from my baby because I have simple cold. A simple cold that because of you, could be as serious as taking a life from a RCDP child.

 

 
From the first time I heard your name, I knew you weren’t good. I knew you were a bad thing. From day one I started my fight with you and I haven’t stopped and I certainly won’t.

 
You are an evil disease that likes to take away. You take big things and small things and I am tired of you getting away with it.

 
You take abilities from innocent loving children who are more than deserving of the things you viciously rip away.

 
I was harshly introduced to you on a day that should have been one of the best. I met you the day after my sweet baby was born and laying perfectly in my arms. You viciously came into my life and started ripping things away from us and from that day, I hated you.

 
It’s because of you that my Jude is going on two and yet he still can’t walk and play. It’s your fault that even though he looks at me and tries while his eyes are telling me he’s longing to, he can’t talk to me. Everyday when his unbearable GI pain consumes him and takes his breath away and I have to sit there holding him while he soaks me in tears and screams for help that I can’t give, I am cursing you. Every needle that pierces his skin, I hate you. Every therapy stretch that causes his pain, I hate you. Every surgery that he goes under, I hate you. Every MRI that tells us bad things, I hate you. Every X-Ray that reveals his deformities and shows us his discomfort, I hate you. Every mile we desperately travel to find help, I hate you. Every spinal tap, I hate you. Every seizure, I hate you. Every little tremor in his feet, I hate you. Every time I have to splint his contracted body and cause him pain, I hate you. Every failed swallow study that confirms he can’t eat normally, I hate you. Every aspiration, I hate you. Every feeding tube change, I hate you. Every time I click on his oxygen, I hate you. Every alarm of his monitor, I hate you. Every EEG, I hate you. Every sleep study, I hate you. Every long night spent crying by his hospital bedside, I hate you.

 
Somedays I fall in the trap, the trap of being bitter and mad. I just want to scream. This battle you have thrown upon us is hard and it’s devastating at times.

 
And then I look at Jude, the one who should be most effected by this and do you know what I see? I see love, joy, strength, peace, hope, victory and I see my Heavenly Father upon him. People often tell me how much of a warrior mom I am and that I fight so hard. But to be totally honest, he’s the toughest one.

 

Everyday I watch him push through pain and find victories. He’s a fighter and while it’s such an incredible thing to witness his bravery and strength, as a mama I don’t want him to have to fight such a harsh battle anymore. Jude is known as “The Brave Little Warrior” and he certainly lives up to that name. But I want my little warrior to be free from this.

 
There is now HOPE! In a clinical trial that is starting around the beginning of 2016. The FDA has approved a drug that researchers and doctors think could be a cure for a lot of their issues. Obviously it would not change their size but they do think it would change their lifespan and quality of life.

 
This is why I fight so hard. This is why I blast social media and blow up webpages trying to raise awareness. This is what we are fighting.

 
Even if you have nothing to donate towards the trial, you can still fight this with us. You can share about our Rhizo kids and you can stand in prayer with us! Please join our fight!

 
http://www.rhizokids.com

#HOPEforRCDP

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30 thoughts on “An Open Letter to RCDP 

    • This little guy has really touched my heart he is a little fighter as well as all the other children I pray for him and you that they do find a cure just to see his smiling little face every day puts a smile on my face I will pray for him every night you have one sweet little guy !!!

    • No matter how many times I read this it always makes me so angry to know sweet, innocent babies are hurting. I know Jude is a very tough little guy & my goodness he’s a fighter! I love that little boy & I only know him through Facebook post and his beautiful pictures! His smile can make anyone in this world happy. Love your story Hannah & everyone including myself will always pray for Jude!

  1. Oh Hannah that just broke my heart. I know Judes story as I’ve been following on Facebook but hearing this side of it from you and as a mother myself that just killed me. I pray with all my heart that they find a cure for these sweet angels. No child deserves to live like this and no parent should have to struggle with this pain for their child..
    My heart goes out to all the Rhizo kiddos parents and families and I pray for all these sweet babies..
    God bless everyone of you.. {{{HUGS}}}
    WE LOVE YOU JUDE! ♡♡♡♡

  2. How your words touch my heart. You are so right-we see this adorable baby who is so cute and who’s smile can melt anyone’s heart. But to imagine the pain and struggles you all face is beyond comprehension. We all have fallen in love with sweet Jude. My prayers is for strength for all of you. I pray for awareness of this horrible disease that has stolen so much from so many. I pray for comfort and a treatment that works. Love and prayers to you all!

  3. As a mom of a son with CDP this touched my heart so deeply. I can remember exact moments of feeling those emotions and saying those words.
    My son is the strongest and most perfect miracle I know! It is so nice to have others to relate to when you are going through those valleys and the victories. I appreciate your honesty! We pray for you and your family daily!

  4. Hannah I follow your fight since more than a year now and you are a warrior and Jude is like his Mum. I never see a mum So determinated than you and I’m amazed by your courage. You and your family are part of mine now. Continue the fight. I Know that 2016 Will bring hope with this new care . Hugs
    Marie

  5. I PROMISE. I promise to get the word out every single chance I get. I promise to make Jude’s voice and all of his Rhizo siblings voices heard because I can speak. I promise to be the very best advocate I can for RCDP. I promise to never let down these precious children and their families if there is a way I can help. I promise to laugh with them, pray with them, rejoice with them and even weep with them. I promise to commit my heart everday to the face of my precious “little warrior”. And I PROMISE to never forget what the parents and families of these precious children endure.

  6. My heart breaks for you and your family.I love to see Judes beautiful smile, but I also know he has a lot of pain, just didn’t know how much you all go through. I promise to put the word out about Rhizo kids to all my family and friends.Please get well soon. Prating for all of you!

  7. Hannah, I am so amazed at your courage, I also agree that Jude is the strongest little warrior I have ever heard about. But, you and your hubby must be the strongest mommy and daddy I know. I weep when I read about your struggles, but rejoice in the victories you’ve seen. Proud to know you and your family. Love you all, and continue to pray for miracles.

  8. Dear Hannah,
    My words will never be enough. I pray for you and Jude. I pray for all of God’s little one’s who suffer with this horrific disease.
    Your written words are so very powerful. I know you will stay strong. You do that because you have to. You are needed by your sweet son and by so many other little one’s. I will continue to pray and to draw awareness. God bless you all.
    Cici

  9. Love reading your posts, but todays totally blew me away! You are such a wonderful family for sharing all your ups and downs with the world to see. I pray every day that we can get the right help for JUDE and so many other children of God. GOD BLESS YOU AND YOURS! Never give up… hugs for all…always Annette

  10. My dear Hannah, I’m known for my verbosity. Today, I’m left speechless. What you have put to pen and paper (old analogy; tells you how old I am) is beyond belief. Only God’s Holy Spirit could have given you such courage!!
    By now you know my story, and how Jude and your testimonies about him right from the first one you wrote about him and your thoughts about him, brought me back to the faith walk I had known for so many years, but had let the cares of this life crowd it out.
    I PROMISE. I will NEVER give up. I’ll continue to pass on your testimonies and Jude’s story as long as God gives me breath!! As I have already done countless of times to my Facebook tribe. And personally to countless others.
    Meanwhile,
    “The LORD bless you and protect you;
    The LORD make his face light up on you and be gracious to you;
    The LORD turn his face toward you by showing you his favor;
    The LORD give you peace and wholeness.”
    [Numbers 6:24-26, MVB]

  11. Oh my Hannah, you have a way with words honey! 😦 My heart aches for your sweet Jude & for you honey. I know that hate you feel mama, my little girl doesn’t have RCDP but has fought every day of her life to be here just like sweet Jude! I pray this new trial will bring better quality of life few for all RCPD kiddos! Just as I pray that one day we have a cure for childhood cancer! Both are evil disease that just take …. Please know I stand in prayer with you & all of Jude’s Tribe! Sending big gentle hugs & my love!

  12. Hi i heard this sweet baby boys story and im just looking for ways to donate money to this family, and if theyre still selling any dwarfism awareness shirts i want to buy one of those as well!! If anyone could let me know in which ways i could donate that would be awesome. God bless this sweet boy and his family!! Merry christmas

  13. Kids and babies with RCDP struggle with horrible and crippling pain everyday of day of their lives.They live in agony and have very limited life spans.Enjoy your time with this little one here on earth while you can.I knew a women who’s baby made it to 2 with this disease and died.He is now in heaven

  14. Dearest Hannah and Family,
    Congratulations on the awesome job you’re doing loving and raising Jude. God chose the perfect family. I will continue to keep you all in my prayers. Merry Christmas.

  15. I’ve fallen in love with your sweet little Jude. His beautiful face and smile is so very captivating. My son was born June 2014, and I see him in your adorable Jude. I imagine what Jude would and should be doing at this stage. His story breaks my heart. I too pray he will be freed from this horrible disease and the pain it causes him. I pray that the cure will rescue him, soon. Hang in there mommy. You are doing a fabulous job. We’re all praying for all of you!

  16. I follow baby Judes story daily. He makes me smile daily. I must admit that until tonight I had just kind of read bits and pieces of his story and adored his photos but wow…..he is blessed beyond measure ro have a mother that has such a faith in God. You have my upmost respect and admiration for all that you are. I read this blog entry with tears streaming down my face uncontrollably but not only for you, your husband and baby Jude but for myself and my 8 children. I am blessed with healthy children and Ive taken that for granted with every pregnancy. I do not have anywhere near the faith that you have yet have a million reasons to do so. Thank you for sharing your heart with us. When I read about the family and friends praying for you at your baby shower I got chills down my body….the Holy spirit is such an amazing thing. I will continue to pray for you all and smile everytime I see your beautiful sons photo. You are doing a great job mama! Sorry if I seemed to ramble.

  17. I have no children of my own. Every baby I meet is my baby. I love children. Seeing Jude in the pain he goes through breaks my heart. I pray for him and all the Rhizo children daily. They are so innocent and precious. Jesus be with you and all families.

  18. You are such an inspiration to all of us and our hearts hurt with you and also rejoice with you. God doesn’t make mistakes and He knew exactly what he was doing when he gave you to Jude. Jude is a precious gift from God. Yes we sometimes wonder “WHY” but we have to accept that God doesn’t make mistakes. My prayers for your family and our little warrior Jude will remain with me till they find a cure for this! God bless little Jude and your family. What wonderful parents you both are…..One may say Jude is lucky to have you as parents but I say you are lucky to have Jude because children like Jude teach us so much and bring us such joy!!!! My heart is so touched by your story and may God continue to be with you as you travel this journey with your little brave warrior Jude!!!!

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