Thank you for visiting our personal Step Forward to Cure TSC Walk fundraising page!
Zeilia Wren, our baby Z, turned one this April. She is a strong, curious, sweet, little girl who brings joy to everyone she meets and melts hearts with her amazing smile and awesome belly laugh. The past year has been full of joy, but it has also had its share of mountains to climb and challenges to overcome. Days before her 5 month birthday, Zeilia starting having seizures. With the help of family, doctors, and an EEG we were able to quickly identify the seizures as Infantile Spasms, a catastrophic seizure disorder. Zeilia was hospitalized immediately and we spent four days and three nights on the pediatric floor while a team of doctors worked to identify the cause of her seizures. After many tests, including an MRI, EKG, Chest X-Ray, blood work, and an ultrasound, the doctors determined that her seizures were caused by Tuberous Sclerosis Complex. It was the first we had ever heard of TSC and it quickly became our jobs to learn everything we could to best support our baby.
Zeilia’s seizures were, thankfully, quickly controlled by medication, but TSC remains a constant part of our lives. We have a very good team of local doctors and therapists who work with and support Zeilia, and we also regularly visit a clinic in Cincinnati which specializes in TSC and has provided her with amazing care.
As we continue to navigate this illness, we have many questions that cannot be answered because so much is still unknown. We hope that this walk, and the funds and awareness raised, will create more opportunities for research so that we and others affected by TSC will begin to find answers both now and in the future. The future is never certain, and with TSC - and its unpredictable manifestations that impact each person differently - it often feels even less so. What we do know, however, is that we will continue to support Zeilia in every way she needs and that we are so grateful for all of the support we have received from our amazing network of family, friends, therapists, and doctors. TSC is only one part of who Zeilia is and she reminds us every day to smile and enjoy all the gifts she has to give. Our love for her grows bigger every day.
Together the TS Alliance and the TSC community tell a story of determination. A stunningly small group of parents, through sheer will and passion, have brought this disease to the brink of a breakthrough. We are joined in our fight by aunts and uncles, brothers and sisters, grandparents and friends, co-workers and colleagues. We’re asking you to join us in the fight to find a cure! Please help support our family who has refused to give up, refused to take no for an answer, even when faced with daily challenges, the multiple medications, and the possibility of seizures, autism, ADHD, facial disfiguration, anxiety, behavioral problems, and other medical complications.
When the Tuberous Sclerosis Alliance (TS Alliance) was formed by four mothers in 1974, the future for anyone affected by TSC was somewhat bleak, but the founders' vision never wavered—they hoped, one day, to fund research into how the disease occurs, identify better treatments and hopefully find a cure. Since then, we’ve identified the two genes that cause TSC, how those genes impact the systems of the body and how the disease manifests itself. As a result, new treatments and new drugs specific to TSC have been approved to shrink brain and kidney tumors and to treat epilepsy. Moreover, a clinical trial recently launched to determine if we can prevent seizures from ever developing in newborns with TSC. But, so much more needs to be done for families and individuals who have lived with TSC for decades and still desperately need answers.
We hope you can join us on Team Z, either to walk with us or to support the cause. You can register to join us or make a donation securely by clicking the donate button on this page.
Many, many thanks!
If you think this page contains objectionable content, please inform the system administrator.