It’s not often I post a photo of just myself and not because I think it’s a bad or weird thing, I just tend to post photos mostly of my son, family, friends and places. In this picture I was … Continue reading
From the first moment I broke the news to you and you wrapped me in your arms and lifted me off my feet with joy and laughter that may have also come with some shock over our unexpected and perfect surprise “Jude”. From that very day, you became a wonderful daddy. Before you even knew his name, you loved him with such a fierce love.
Our journey with parenthood quickly came with heartbreak and fear. I’ll never forget the way you stood strong in your faith and believed for the best even when they told us to prepare for the worst. Every scary appointment you stood strong in your faith and you held my hand.
I’ll also never forever the day I was rushed to the hospital 32 weeks pregnant and I almost lost Jude. I was terrified and in such pain and then you came rushing in by my side with tears running down your face although it was also filled with so much strength and grace. You brought me peace. You took on strength for the three of us as you fell by my side in prayer and fought for all of us.
Walking down that bright hospital hall to meet our Jude was terrifying as we were told to prepare for the worst but you stayed strong the entire time. You prayed as you held my hand and you gave me the motivation to bring him into the world as your faith in me gave me the strength to do so. The look on your face when you saw his for the first time will forever be burned into my memory. Our miracle entered our world and he was a fighter like his daddy from the very first breath he took. My love for you grew so much stronger and you looked more perfect to me than ever before. I watched you step into your new role with such great faith, joy, pride, love and peace.
Through all the medical prognosis’s, procedures, surgeries, MRIs, ambulance rides and sleepless days and nights with our boy in a hospital bed you have been a foundation of strength for us. Every prayer you have prayed blesses me. Every tear you have cried although it has broken me in ways, it also reveals to me the love you have for Jude. When he hurts your heart feels with him and when he’s laughing on cloud nine, you’re lit up with more joy than ever.
Jude can’t talk yet you understand him so well. You know his cries, his cues, his laughs and his expressions. You know his ways of telling you he loves you.
We have heard 100 times from people and different doctors about how Jude isn’t average. The way that you always make things work perfectly for Jude melts me completely. You have done everything to have a perfect father son relationship and you never make Jude feel like he can’t do things. The way you believe in him is so inspiring. And the things he has a hard time with, you do it for him. You’re his strength. You’re his joy. You’re his motivation.
I learn from the two of you every single day. You have taught me so much more about the fathers love for us by demonstrating that same love with Jude, you have taught me to have joy amongst the storm, you have taught me that everything is possible even if it’s not absolutely perfect and you have taught me how to fight.
The love you have for Jude and the love he has for you is breathtaking and perfect.
You’re a hero. You’re a wonderful daddy and I am so blessed to be on this journey with you. Happy Father’s Day, babe! Jude is blessed to have you as his daddy, pal, playmate, protector and hero ❤️
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!
#FIGHTINGforJUDE #fightingforacause #HOPEisEVERYTHING #HOPEforRCDP #judestribe #judesjourney #prayforjude #rhizowarrior #superjude #bravejude
For over two years this cozy room has been home. At 32 weeks of pregnancy with Jude I was put on bedrest and we moved in with my parents. They gave as a cozy space to make our own and it certainly served us well. This is the room I would lay in for hours and anticipate life with Jude. The room I spent days and nights praying over his precious life along with our family. The room I daydreamed about his little face. This is the room I came home to and found comfort after scary doctors appointments. The room we set up as Jude’s nursery and hung his name on that wall and his “Brave Little Warrior” banner. We tucked away his tiny clothes and set up his cozy crib. We made it such a perfectly sweet nursery and Jude loved every moment of it, as well as us. This is the room we brought baby Jude home to from the hospital and it instantly became his place of comfort. This is the room I learned to be a mama in, I spent nights nursing him in, I rocked him many hours in, we took many naps together in and I stayed up many nights with him in. This is the room where grandma and grandpa came and said goodnight to him every night. The room grandma would rock him in to give a very tired mommy and daddy some rest. This is the room Lucy spent everyday with us in. We watched Jude achieve many milestones in this room and we all danced around it with each one. We’ve spent many nights praying over him, reading him stories and singing to him here. He has had countless therapies here and nursing visits. This is room paramedics rushed to his side in but the same room he thankfully came back to. He had many photo shoots and news stories in this room. He had comfort, joy love and many fun times here. Although we had to downsize and put our belongings in storage and sometimes space became a challenge, this room became much more than just our room…it became home. The home we joyfully came back to after each hospitalization, long trips and long days. It was certainly cozy and lovely. It holds such precious memories and will always mean so much to us. It will always be Jude’s first cozy home. Thankful I can still always come back with Jude and remember all the memories we made here together and even make new ones as they are now turning it into a room for the grand babies. Today is bittersweet as we say goodbye to our first home and say hello to a new house that will be our new home. The end of a beautiful chapter and the beginning of another. Thank you to my wonderful parents and Jude’s grandparents for giving us these perfect memories. Thankful we are only FIVE MINUTES AWAY!!! 🙌🏼🙌🏼🙌🏼🙌🏼🙌🏼
I can hardly believe it’s been two years since the most beautiful miracle entered my world. It was a day that was long awaited with both excitement and nervousness.
We arrived excited but in total honesty we walked that bright long hall to the delivery room carrying some fear. But we believed and proclaimed that we would come back down that hall with a beautiful life in our arms.
The labor was long and hard! Almost 20 hours. All along I was so excited to meet him but I was so scared to take him from my womb because I knew he was safe there.
His daddy and his grandma stayed with me through the whole thing and coached me on. And while I could see excitement on their faces, I could also see the same fear on them that was on me.
But when he arrived and his daddy got the first look at him, I will never ever forget the look on his face. Such relief, joy, passion, peace and love all in one expression. It’s a moment I will never forget. It’s the moment I loved him even more than I ever thought I could. I watched him become a daddy with such pride and love.
They prepared us for the worst but we clung to the best. We believed for life, breath, peace, joy and miracles. And at 3:06 am, I saw the perfect face of a warrior, my warrior boy.
They said his body would be to fragile for him to breathe on his own and said we wouldn’t hear a cry. But when they held him up for me to see him, he let out the most incredible warrior cry. My miracle was breathing on his own. He was alive! He was everything and more that I dreamed he would be. He was the most beautiful sight to behold.
They said he would go straight to the NICU that they had me tour and said I wouldn’t get to hold him right away.
After he was born and I got my first look at him, they rushed him to the surgical room connected to my delivery room. I watched doctors, nurses and students crowd the room and I could hear his perfect cry. I was devastated and aching at the fact that I couldn’t hold him. I needed to hold him. A few minutes passed and I saw him in a nurses arms headed towards me. And my aching was gone because they placed him on my chest and my whole world pieced back together. The fear that tried to cling to me for 9 months was gone. The words of death that were spoken over him by the enemy were lies. HE DEFIED THE ODDS. The first breathe that left his body was a miracle. He came into this world with a warrior cry and from his first breathe, his LIFE was a testimony of the goodness of God.
His first breathe fulfilled all the promises the Lord had given to us.
In these past two years we have had moment of pain, confusion and testing. Jude has has multiple surgeries and many hospitalizations. We have painfully placed him into the arms of strangers (surgeons) and sat long hours that felt like eternity trying to catch our breath until he came out. We have spent many nights on hospital benches and even nights crawling into his hospital crib with him. We have spent countless hours at therapies and doctors appointments. We have traveled many long miles to get him the best medical care. And we feel as through we have become therapists and nurses ourselves with his medical care.
I’ve received several messages asking why I brought him here to suffer. How could I choose this life for him.
Jude is the most joyful person I know. He has all the reason in the world to live unhappy and yet he has a smile and sweet giggle to share with anyone and everyone.
Jude loves life. He has pain at times but he never lets it bring him down long. Jude is a
strong fighter and he is defeated obstacles they thought he never would all the time.
This has been two years of miracle after miracle, two years of promises fulfilled, two years of victories, two years of unspeakable joy and two years of unmeasurable love.
My sweet Jude,
From the moment I knew you were coming, I loved you. And when I heard your heart beating, mine nearly beat out of my chest. From the moment I got my first look at you on that little screen, I thought every inch of you was perfect. And then when I got to see you and wrap you in my arms, I knew I was holding a perfectly created masterpiece. Your sweet brown eyes take my breath away every single day. Your little expressive eyebrows tell me how much you love me with every little raise and that huge smile on your face. And every single breath you take, I am proud of your strength. Your heart is filled with so much joy and love and everyone who meets you falls in love with you! To know you is to love you. You are certainly God’s most perfect masterpiece, my love. I am the luckiest person in all the world because I get to be your mama. I promise to always love you with all that I am. I promise to protect you and keep you safe. I promise to lift your precious life in prayer and believe for continued miracles. I promise to be your #1 fan and cheer you on with every single milestone. I promise to never give up fighting for you and with you. I promise to always be by your side. I love you forever and ever and ever, my brave warrior boy ❤️
Two years ago today, my mom, sisters and friends hosted the most beautiful baby shower for Jude. The theme of the shower was “Brave Little Warrior” everything was put together so perfectly and so many of my closest friends and family joined to celebrate Jude’s beautiful life.
We knew at that point that Jude had a form of skeletal dysplasia but we were believing for a healthy baby no matter what the doctors were speaking to us. So we all joined together to celebrate and believe for the best.
They sat me down in the middle of the living room and started praying for Jude and I. They spoke words of healing and peace. My pregnancy had already been terrifying and hard. Every appointment had scary news that Jude wasn’t growing and they were continually worried. During the prayer time at my shower we all prayed and believed for smooth sailing the rest of my pregnancy. As soon as I got up after prayer my water broke. I rushed to the bathroom and realized I was losing a lot of blood.
I was then rushed to the hospital by ambulance where my husband met me. The whole ride there was terrifying. I was contracting and they said there was a good chance the baby would come on the way to the hospital and we’d have to pull over and then keep going once Jude arrived. Thankfully we made it to the hospital! As soon are we arrived they began prepping me for emergency c-section and I knew it wasn’t good. Jude was already too small and I was only 32 weeks.
My sister posted a request for prayer on Facebook and which is how Jude’s Facebook page began. We started his page to update friends and family on what was happening because our phones were blowing up with requests for updates.
My husband arrived and instantly knelt down beside me and started praying for my pre term labor to stop and for Jude to be ok. By the grace of God my labor did stop! Doctors didn’t understand it, but it stopped.
They decided to give me steroid shots in hopes of it helping Jude’s lungs develop and they decided they would then try and get me to carry him 24 more hours. 24 hours then led to 48 and then 72 led to a week and before I knew it, I was able to stay on bed rest and carry Jude to term!!!! This was a miracle.
Doctors said it would be a case study because I shouldn’t have been able to carry him to term. But somehow my amniotic fluid replenished and Jude was stable. We know it was prayer!
Jude will be 2 years old in a little over two months! I will be posting throwbacks leading up to his birthday with more of his story. Thank you to everyone that has been faithfully following Jude’s journey and encouraging us! Your love and prayers mean so much to my family ❤️
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/
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 … Continue reading
You have always loved music. I imagine if you had the ability to, you would get up and dance.
The outdoors always bring a smile to your sweet face and makes your tiny heart race. I imagine if you could, you would get up and run really fast.
I see your little lips trying to form words when you see your mommy and daddy and I know that if you could, you would call us by name and tell us how you love us.
I see you try to form words when a song comes on and I imagine your voice would be the absolute best.
I can’t give you everything my heart desires to give you but I can promise to do my best.
I promise to pick you up when the music is playing and sway to the rhythm so you can feel the dance. I promise to hold you up in the air so you can feel the refreshing breeze on your face. I promise to hold you tightly to my chest and sing to you so you can feel the words forming into a song. I promise to be and do anything you can’t. I will be your dance, your song, your steps, your voice and anything else you need me to be. I will be everything for you. It’s the least I can do for someone who is everything to me.
I love you, Jude ❤️
My sweet Jude, I can hardly believe that you are already a year old. While at the same time I don’t even remember what life was like without you in it. Since the first moment I learned of your existence, … Continue reading