1 year seizure free: Brynleigh's tuberous sclerosis story

Photo credit: Karina Martinez Photography, Frederick, MD

Dear Dr. Curry, Dr. Weiner, Dr. Coorg and the medical team at Texas Children's Hospital,

This week we are celebrating ONE year out from two brain surgeries and our daughter, Brynleigh, still being seizure free! How could we ever begin to put into words the gift you have given our daughter and family? We are thankful, grateful and blessed. One year ago we were anxious about the surgeries and your team made us feel completely comfortable and at peace as we handed over our almost 3-year-old daughter to the surgical team. We will remember those weeks, moments and hours forever. We saw Brynleigh's last seizure on Oct. 14, 2016.  

We are so lucky we found your team of specialists. As you know, our daughter was diagnosed with tuberous sclerosis complex (TSC) when she was 9 months old. TSC is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability and autism. For our daughter, the seizures wreaked havoc on her little body as she suffered anywhere from eight to 12 seizures most days and 25+ in 24 hour periods as they progressively got worse. After several attempts to try various cocktails of anti-seizure medications, the team at home could not get her seizures under control and we were told her best chance would be surgical intervention. After much research, we found your team at Texas Children’s and began the journey to brain surgery. We knew this intervention was the gold standard to get seizure control and help her long-term so we wanted her to be in the hands of the best team with the most experience ... that was your team at Texas Children’s.  

Throughout the entire process we felt we were treated like family, not a medical record number. From the minute we walked through your hospital doors we knew we were at the right facility and your team could help our daughter. Making the decision to hand your child over for brain surgery is an extremely difficult one, but your team eased our fears, answered every detailed question and made us feel like we were truly a part of every step of the journey to surgery.  

Where is our daughter today? She is still fighting a lifelong battle with TSC, but with her seizures under control, she has been able to finally experience what it’s like to just be a little girl. Sure there are many days filled with doctor’s appointments, testing and therapies, BUT now Brynleigh has been able to do so much more! She loves everything with Disney princesses, she enjoys rides at amusements parks, she can play with friends, read books and her biggest adventure just began as she started Preschool last month! She will be turning 4 next month and is excited about her Frozen birthday party. It fills our hearts with joy (and often a few happy tears) to see her doing what her peers are doing and experiencing each milestone as they come along.

This journey has brought our family closer, pushed us to volunteer and advocate more for everyone affected by TSC, shown us every single day is a gift and to live life now and not wait to take adventures or have special experiences as a family. We pray for a cure for TSC and we know there is no crystal ball to give us answers about Brynleigh's outcome with TSC, but for now we chose to BELIEVE in a cure. We know she has the potential to be the best she can be even with TSC. We won't let this diagnosis define her. Your team gave us a very special gift one year ago and we are forever thankful to each and every one of you.

We will continue to refer patients to your team and tell them about the miracles that happen at Texas Children’s.

Sincerely,

Sean, Lauren and Brynleigh Shillinger