Thank you for visiting Will's Children's Champion page!
We decided to support NCH this year as it has been our family's home away from home since Will entered this world on 3/18/20. Will initially spent his first 133 days in the NICU. He was supported by a wonderful team of nurses, physicians, therapists and new friends. They kept Mom and Dad sane and turned into an extension of our family while we worked through Will's early medical challenges during the trying times of the early pandemic. Will underwent three major surgeries during his first stay in the hospital. Will was a NICU "graduate" on 7/29/2020 and finally got to meet additional family and friends.
Will had a brief stay at home before heading back for further evaluation of episodic breathing problems. Will's second stay was several weeks long and very stressful involving several "code" events, additional major surgery and several procedures. Thankfully, Will is one tough guy and made it home again to spend the majority of the winter home.
In January of 2021, after extensive testing including whole exome sequencing, we discovered that Will has a genetic syndrome called Cornelia de Lange Syndrome (CdLS). The diagnosis doesn't explain all of Will's abnormalities or change what we are doing for him, but does connect us to other parents and a supportive community. During the winter we also had planned admissions for additional jaw surgery and a second attempt at a G-tube, which was thankfully successful.
Most recently, Will had successful open heart surgery to repair his congenital heart defect and a subsequent brief hospitalization for some heart rhythm monitoring. In total, Will has had 8 major surgeries, 7 hospitalizations, 3 EMS runs (shoutout to Norwich Township EMS), ~16 COVID tests, an ambu bag valve mask in every room of the house and 1 head-shaping helmet adorned with stickers from his bar friends at "Three's Above High".
We are slowly getting accustomed to our new home life with continued outpatient visits and home PT/OT/speech therapies. We have fantastic home nurses that provide help, grandparents that have been there for us any time we need, and the most supportive friends and neighbors!
Will still has a long journey ahead of him with many significant challenges. We are so blessed to be close to Nationwide Children's Hospital and know Will is going to be his best self with all of the help of all of his team! Please consider supporting this great cause!
Did you know the purpose of the Nationwide Children's Hospital Columbus Marathon & ½ Marathon is to raise funds to support life-saving research and care? Nationwide Children’s Hospital is committed to treating all children regardless of their family’s ability to pay, which cannot be achieved without community support and generosity. We are participating in the race for this mission and we determined to help children from all 50 states and more than 60 countries treated at Nationwide Children's Hospital. Won’t you join me in helping kids everywhere?
Please consider supporting the most meaningful marathon in the country by making a donation today.