Champion is almost three years old and our first child. The day after he was born we found out that he had tetralogy of fallot, a congenital heart defect and would require open heart surgery. At four months of age he underwent a full repair on his heart. While in the hospital recovering from the surgery, we learned of Champion’s full diagnosis, Miller Dieker Syndrome, a micro deletion (a small piece is missing) of his 17th chromosome.
Champion is full of joy. He seems to always be ready to offer a smile. He loves to laugh and will start laughing just because someone else is laughing. He enjoys looking at books, turning the pages, and listening to the stories. His all time favorite activity is to be in his walker. Whenever we ask him if he wants to go in his walker he gets so excited, starts kicking his legs, and almost jumps out of our arms.
Champion is very determined. He will work hard to find a way to do something that he wants to do. Right now he is very motivated to be mobile even though it is tough for him. There have been many things that looked like they would be impossible for him to do… and then all of a sudden seemingly out of nowhere he would start doing it.
For example when he was very young he would only turn his head to one side and it seemed like he would never look the other way. All of a sudden he did. Then it seemed like he would never have head control. All of a sudden it became easier for him to hold his own head up. It seemed like he would never clap his hands and one day he did. It seemed like he would never be able to walk in his walker, and then he started. Below is a picture of him on the day he decided to hold himself up in the shopping cart.
There are so many examples of him accomplishing things that seemed impossible that whenever I get discouraged I just remember the victories he has already experienced.
Currently he is fed by g tube. We are hoping soon for him to be eating by mouth and be able to say goodbye to the tube. This is one of the main areas of focus for us right now along with Champion’s mobility and speech. We are hoping for the day when he surprises us with balance and is able to sit and walk unsupported. In the meantime we work with him regularly using the techniques learned in therapy and keep being surprised as he picks up a new skill and shows us that miracles still happen today.
he is so cute!
i hope that you will be fine!
your parents are so blessed to have like you
‘coz you are a happy go lucky child!
God Bless You and your family!
more power!
from Philippines
Thank you so much for stopping by and also for the well wishes and the blessings! We truly appreciate them!
What a story of God’s blessing and the way He moves. Remember with every dark cloud there’s a silver lining! Keep positive and looking for the bright side! (By way of Fellowship Fridays).
Thanks for coming by and for the encouragement 🙂
What a beautiful story! He’s lucky to have such encouraging parents that never give up on him!
Awww thank you very much Teresa 🙂 !
OH WOW! My son Brandon has Tetrology of Fallot too! He also has a micro-deletion on CHD7, causing what is known as CHARGE Syndrome. These little fighters really defy the odds! Your sweet boy is just the cutest little thing. What a face, like a little professor!
Oh Wow!!! I knew you were a heart mom but I didn’t realize it was TOF also!!! Early on when I was doing a lot of research about TOF and Miller Dieker I remember coming across CHARGE Syndrome a couple times as well. It is awesome to “meet” you! Its always great to know another mom who knows about the same heart condition and understands about the mirco deletions. I am always so amazed how intricate the human body is and how such a tiny piece of DNA missing affects so much. Thank you so much to for the compliments of my son!
We just had a cardiac MRI this past week. We’ve got some surgery in our future…
Hello!
Thank you for sharing your special story with the world. I am a special ed teacher who is new to the world of blogging. My goal is to gain a better perspective on what parents of children with special needs experience on a daily basis. I want to gain a deeper understanding of what families experience so that I can partner with the parents of the children that I serve and provide the most appropriate educational program that I am capable of. It is by reading stories such as yours that I am able to gain a deeper understanding of the variety of experiences and the range of emotions parents and families experience. Thank you again for sharing Champion with the world – he is indeed (to use your words) a miracle! Little by little you will see progress and I can’t wait to check back and join in your joy!
Thank you again!
Kerri
Thank you Kerri for coming by! I think that is awesome that you are seeking to learn what the families you work with are going through on a daily basis. I think that understanding will go a very long way with the parents and kids you work with. I really admire that, I know that the relationships we’ve had with professionals that work with Champion have been the best when there is a real understanding of the challenges we’re facing. Thank you for the work you do and for your encouragement!
What a wonderful post! I stepped over your blog by chance, because somebody in our Miller-Dieker-Group found you and mentioned it. My daughter has MDS as well. She is four years old and also on g tube in the meantime. I am very impressed at your Champions skills. Walking, sitting in a shopping cart, focusing properly is just way out of what we experience. Still it’s a lot more than we were told, but not comparable to your son. You had been working very hard and I hope you are as proud of yourself as anyone can be. God bless and keep on the good work! All the best for your family – from one MDS mom to the other 🙂
I am so glad you stepped over to my blog. I love connecting with other moms of MDS kiddos. It’s such a rare syndrome it is not often I come across another family facing the same diagnosis. Thank you so much for your very kind compliments! It has definitely been quite a journey as I know you can definitely relate to. It’s been a bit lonely on our journey. My son has the Miller Dieker diagnosis and is missing that piece of his chromosome but as one doctor said he is a bit of an anomaly within the anomaly. It does seem like across the board these kids have a lot of determination and tend to defy some of the odds we’re told as parents. Have you came across pressuresupport.com? I really enjoy reading Liam’s story also, he has MDS as well. I am really glad you stopped by and reached out!
Hi! My husband and I are 23 weeks pregnant and just got the same diagnoses as your son for ours. I was wondering if you have time to email me back and forth. The doctors paint such grim pictures, reading your blog and your sons story fills me with so much hope and joy. Nothing the doctors can tell me can compare to your personal experience. My email is ngocrowcunningham@gmail.com if you don’t have time I completely understand. I just want to say thank you for writing this down and sharing it. I have meow hope finding this then I have in the past month of all these new diagnoses. Thank you
Me-Ly
Me-Ly, my heart goes out to you. I am so glad you reached out. I can only imagine the fear, heartbreak, concern, unknowing, grief and just mixture of emotions you and your husband are experiencing. One of the reasons I wanted to blog our story was so that other families facing a diagnosis like ours can see that this is hard, really hard but also is such an incredible gift, like way beyond anything I could have ever thought or imagined. You are embarking on a journey that will be extraordinarily hard but also extraordinarily beautiful in so many ways. I know how you feel, we were given such a grim outlook for our son and how life would be. I understand doctors need to be realistic and give facts but there is another incredibly beautiful side of this life that is filled with hope, an incredible intense love unlike anything else, and a whole community of mothers and fathers who are on this journey with you and will be there to help you along your way. I am more than happy to email with you and will send you one now.
Also at the bottom of the post I am linking to is a beautiful video of parents of children with special needs and what they would go back and tell themselves when they were first starting in the journey your family is embarking on:
Here is the link: http://www.thesweetandthesalty.com/2012/09/10/an-elite-club-indeed/
I think the video may help to provide some more hope and encouragement. I will also be praying for you. My heart truly goes out to you.