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Christopher’s Story

Chris was born in 1982 with what we would learn many years later was CHARGE syndrome. He has all six of the common disabilities described in the acronym CHARGE. His 41st birthday is coming up on us very soon! Wow!

Chris fed with an old bladder catheter feeding system until he was 3.5 years old. He ate blended baby foods and goats milk from a farmer via his tube until he was able to swallow independently. His first language was Signed English, but by age seven he was speaking some oral words and even learning some American Sign Language (ASL). He is now fluent in oral English and ASL.

Chris has had many surgeries including three open heart surgeries. He recently ordered some new sixties retro glasses and is looking really cool on campus here at Stephen F. Austin State University. He will graduate this year with his second bachelor’s degree which will be in Sociology. Chris loves people and is one of the kindest men you will ever meet.

We hope to come to Florida this summer to see our many friends and family members within the CHARGE family. Chris’ life has been a blessing to our family and those who know him as we observe the never-give-up attitude he lives out in his life. As a family (and of course Chris included) we attribute his life successes to God who has given us wisdom for care decisions we have and continue to have to make fairly regularly.

What would you like to tell other people about CHARGE syndrome?

Look beyond the physical disabilities of those born with CHARGE and you will find wonderful minds craving to learn and seeking friendships. Be positive and know that gains are made by each child born with CHARGE in his/her own time. In our lives, I have called my son’s gains: Chris Time. In Chris Time, he will walk… and he did. In Chris Time, he will eat and speak….and he did. Put the child’s name right out there first before the symptoms and anomalies that present themselves physically. Also, never lose sight of what you can be taught by each unique relationship you build with a child born with CHARGE.

The 2023 global theme for Rare Disease Day is “Health Equity.” What does equity in health mean to you?

Health Equity has taken on a new meaning for us as we now move in the realm of adult medicine for Chris. I believe the self-determination and self-advocacy skills stakeholders in his life have taught him have allowed him to build his own relationships with professionals in the medical field. Telling medical professionals to listen to him and allow us to be a part, but not sole decision-makers for his care constitutes “health equity” for Chris.