Today I was asked to share some of our families journey with you and how much Happy Wheels played a part in our journey.

On December 24, 2021 we welcomed our son Elijah into the world. While we were pregnant we were told that Elijah had a 90% chance of being born with Down syndrome. We began diving head first into research to learn more about our sons probable diagnosis and what that would mean for his future.

An individual with down syndrome can be affected by many different medical complexities and conditions. That magical extra chromosome can often times come along with other medical conditions.

When Elijah was born he was diagnosed with trisomy21 and was also diagnosed with several of those medical complexities associated with Down syndrome. His most concerning condition being his congenital heart defect, a transitional AVSD. An AVSD is essentially a hole in the center of the heart affecting all 4 chambers. It's often referred to as the cross of the heart being broken.

From birth Elijah was hospitalized for exactly 6 weeks. While hospitalized we found our amazing lucky few community. This is a term we refer to in the Down syndrome community as being the lucky few who get to experience the magic of a child with an extra chromosome. We also got to experience just how incredibly supportive our Down syndrome community is. I lived with Elijah in the hospital for those 6 weeks. People that we didn't even know made sure that I, Elijah's mom, was taken care of and sent personal care items, gift cards, little gifts for Elijah to use during his therapies, baked goods, coffee, the list goes on and on.

Elijah was discharged from the hospital at exactly 6 weeks old and the next several months we spent life just filled with therapies and appointments. We quickly discovered that hospitalizations for us would never be short ones. A simple visit to the doctors office could easily land us in the hospital for days and often times without warning. A trip to the emergency room guaranteed we were being admitted. We enjoyed our hectic schedule and balanced as best as we could those months leading up to Elijah's open-heart surgery.

Elijah had his transitional AVSD repair on July 12th, 2022. We were told to prepare for a lengthier hospitalization. Typically children with Down syndrome are hospitalized anywhere from 2 to 3 weeks after a repair. Upon his pre-op appointment at MUSC we discovered that his heart defect was far more complex than we had originally thought and this was going to lead to an even longer hospitalization and recovery time.

On the day of Elijah's repair, surgery was more complex than his surgeons or his cardiologist expected. We expected a 6 to 8 hour surgery,  Elijah was in the operating room for over 10 hours. They had difficulties getting him off of bypass, so Elijah came out of the operating room on ECMO. ECMO is life support for those of you who may not know. It was truly the most terrifying time of our lives.

After 13 very long hours we were able to see our boy. It was incredibly difficult to see him in that state. We knew being placed on ECMO gave Elijah roughly a 50% chance of surviving and we were terrified.

We were blessed with the ability to see Happy Wheels multiple times during Elijah's cardiac hospitalization. Those days that were just hard were made a bit better when you'd see the Happy Wheels cart roll up. Elijah was too small and too fragile to pick items for himself so I took on that task. It was such a joy to see all of the different items you could pick from to put a smile on your child's face. I'll never forget the day that Happy Wheels stopped by and I was not in the hospital room. They left a surprise for us, a surprise I had been hunting for months! That day the volunteers chose a CHD Wubbanubba for Elijah and left me a gift card to Starbucks. That was my favorite visit throughout our hospitalization. That Wubbanubba now lives in a shadow box in Elijah's bedroom.

Elijah's recovery journey was lengthy and it was very complex. Elijah spent five days on ECMO. After successfully decannulating from the ECMO machine he required a second aorta repair. The cannula site had begun impeding blood flow within his aorta. At what would have been 11 days postop, our son was undergoing a second open chest cardiac repair.

MUSC became our sons home away from home for 30 days in total. We were fortunate enough to be blessed with a medical staff that cared immensely for our son, volunteers that helped bring joy to our hearts, and a community of people who helped ensure we as caregivers were taken care of as well.

When Happy Wheels rolled down the halls of the cardiac floor it was like time stood still. It was a time to be happy despite what battles the day was bringing. It was a time to slow down and enjoy the moment of seeing your child smile with their new gift.

We cannot thank you donors who help make Happy Wheels mission possible. Without all of you, families like ours wouldn't get that weekly pause from hospital life to enjoy our child's smile or laugh again. We appreciate you all more than you will ever know.

I'm very happy to say that Elijah's cardiac repair has remained stable. He is thriving and growing and is such a happy baby. He is now 16 months old. He adores his older sister and will very soon be a BIG brother. While there is still the small possibility for a second repair in his future we have been fortunate enough to likely not need that for many years!

Happy Wheels will forever hold a dear place in our hearts. While Elijah was fighting to survive his heart repairs, Happy Wheels was helping us pause and remember there can be joy amongst the darkness.

Thank you all for allowing us to share a little bit about Elijah's story and I hope that by hearing his testimony that you are called to help aid Happy Wheels in their mission to bring bright smiles to children facing dark times.