'My children both live with a rare disease'

We were connected to the Tuberous Sclerosis Alliance , a non-profit organization, and through them we were able to meet families like ours, in our local region, who have children affected by TSC. It was helpful to understand the challenges that they had faced and how they handled them. After all, TSC is a rare disease, only 50,000 people in the US have it. Some people can go their entire lives without meeting another person with a TSC diagnosis.

Fortunately, medication has helped my son tremendously. Since he was diagnosed, Colton has been taking medicine to help avoid invasive brain surgery, which would have been needed to remove the tumor that was blocking fluid from flowing through his brain. We have tried to keep life as normal as possible, but the pandemic had a huge impact on our family. Treatments altered because we weren't able to visit Colton's specialist at Lurie Children's for most of 2020. Psychologist appointments were also moved to telemedicine which wasn't as effective for Colton. When we were able to schedule appointments at the hospital, COVID-19 tests were needed prior to each visit.

For parents who are eager to regain control after a TSC diagnosis, I would suggest advocating for your kids, it has become a big, empowering part of our new lives. My wife and I learned that so many doctors and teachers do not really understand TSC or what it entails, so we have to be willing to educate others and stand up for our child's unique needs.

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