Chicago Walk FY19

Isabel and The Incredibles

Our beautiful daughter, Isabel, was born January 17, 2015 and is now 4 1/2 years old. She was diagnosed with TSC at 6 weeks old, although she was discovered to have a white mass on her heart at the 20 week ultrasound, which turned out to be multiple rhabdomyomas . Isabel was born with numerous tumors throughout her body including her brain, heart, eyes, and skin. Our biggest challenge has undoubtedly been her battle with her brain tumors which have caused her refractory (uncontrollable) epilepsy which has been going on since she was 5 months old. After two years of trying multiple different combinations for medicine, it was decided the best course of action for Isabel was an open craniotomy. In November 2017, Isabel had her largest brain tumor removed. The surgery process was trying on the entire family to say the least, and recovery was a very long road.
On April 26, 2019 Isabel had her second brain surgery operation, this time a laser ablation. 18 depth electrode probes were placed through her skull into her brain to monitor her potential "hot spots." After a difficult decision we decided to proceed with the procedure. As of this writing, May 7th, we have not seen any clinical (visible) seizures. We are still suspicious of activity that is occurring while she sleeps, however, known as ESES, or Electrical Status Epilepticus during Sleep. We are 2 days away from another potential surgery but need another EEG to determine if we need to proceed or if her seizures are actually under control. This post may be updated by the time of the walk...
Today, Isabel has slow motor skills, low muscle tone , and trouble focusing from time to time. She is still not strong enough to consistently roll from her back to her stomach consistently and does not sit up yet. She is also non-verbal which makes everyday decisions complicated as we must go through an array of different things she may need when she whines for something she needs or wants. Although we see progress each day, she is still far from where her peer group is and lacks any independence, including feeding herself and having a simple drink of water. She will also be in diapers until she has the ability to properly use a bathroom or tell us she needs to go.
These past 18 months+ have been substantially lifechanging for Isabel and our family. In addition to brain surgery, she also became a big sister and started preschool. Isabel is taking her role as big sister seriously, although she does get jealous from time to time. She is loving school and making new friends! Even with transitioning out of Early Invention, we are lucky we were able to keep a lot of our EI therpists on through private insurance. Isabel's schedule is jammed packed with preschool in the morning and then her additional private therapy sessions in the afternoons. She's still taking medicine multiple times each day and is a true advocate for the TSC community. She was the "Star of the Show" at Bcureful's charity fundraiser in 2017 (dubbed the "Isabel Bash") and has already visited her congressman to tell him why TSC funding is so important. Through all of it, she is tolerant, loving, and full of joy. Randall and I couldn't be prouder of her everyday. Something that comes so easily to other children, like holding a spoon, is so difficult for our Isabel, but she keeps trying everyday. She is a fighter and a true TS Warrior!
This is a lifelong disorder that has to be monitored as this disease can manifest in so many different ways over the course of a lifetime, so we will never be out of the woods… until we find a cure! Randall, Isabel, Samantha and I were overcome with all the support we received through this past year. Our friends and family have been so incredibly generous - surprising Isabel with balloons and flowers in the hosptial, bringing us dinner and donating to find a cure for TSC. But just like Isabel, our work never ends and we will give everything... BUT UP!
People always ask "How can I/we help you?" Want to be an Incredible for Isabel? Donate today, not tomorrow, not next week, not right before the event, but today. And reach out to your friends and family and share Isabel's story and ask them to contribute to our team, Isabel and the Incredibles!

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