I am a teacher of the visually impaired, and have worked with children with CHARGE in the past. So when we were told at 25 weeks that our baby most likely had CHARGE, I had some inside information!
Tucker was born at 38 weeks. He was delivered via c-section at a children’s hospital. Tucker was intubated at birth and had surgery the next day to repair his tef/ea. After a failed extubation it was decided that he needed mandibular distractors. This procedure allowed him to be extubated for about a month before he required a trach. He also had surgery for a gtube, as he was unable to swallow.
Tucker spent a total of 5 months in the hospital before being discharged.
Mom, dad, and big brother Hunter, were so excited to have him home.
Tucker enjoyed swimming, camping, and going on adventures. He loved proving that having a disability did not mean he couldn’t do whatever he wanted.
Mom became the Foundation’s Family Liaison for PA and helped create a support group for other parents with young CHARGERs.
Tucker gained his angel wings in January of 2023, and now his family is working to spread awareness for CHARGE syndrome.
What would you like to tell other people about CHARGE syndrome?
In the nicu, I told Tucker that although he had CHARGE, it did not define who he was or what he was able to do. We were able to adapt everything our family enjoyed doing so it was safe for Tucker to participate. Do not place limits on children with CHARGE. They are some of the strongest children I know.
The 2023 global theme for Rare Disease Day is “Health Equity.” What does equity in health mean to you?
We needed to do a lot of advocating for Tucker in the hospital. We educated our teams about CHARGE and questioned their decisions if they didn’t align with our knowledge of CHARGE. Health equity to me would mean resources for teams to be educated in rare diseases.
