This is the story of Ezra as told to us by his parents, Ryan & Bobbie:
The last thing a parent wants to hear is, “Your child has a rare genetic disease and will struggle with seizures the rest of his life.”
However, that is what we were told when we had to rush Ezra to the emergency room after noticing some odd movements and then finally a complex partial seizure. Ezra was only 2 months old. We were blessed to have an ER doctor that recognized his disease right away after seeing his MRI and we were quickly loaded into an ambulance and admitted to the Children’s Hospital of Milwaukee.
The doctors and nurses in the Epilepsy Monitoring Unit at Children’s Hospital were welcoming and patient with us. Ezra had to be hooked up for brain monitoring for the week, so that they could see where the seizures were coming from and develop a treatment plan. The neurologist showed us such kindness. He pulled up a chair and sat with us for an hour answering our questions and explaining options.
The diagnosis: Tuberous Sclerosis Complex (TSC) — the disease varies from person to person but is a mutation of the gene that controls tumor growth. TSC varies greatly, but those showing symptoms so young are plagued with uncontrollable seizures due to benign tubers (tumors) in the brain. Ezra has more than 20. He has tubers in his eyes, heart and kidneys that require constant monitoring. His skin is also covered with white spots and growths that can cause irritation.
Ezra is now 5 ½ years old and has had quite the journey. We’ve had many ups and many downs, but we have been blessed to have a very supportive medical team at Children’s Hospital. We are there several times a year for checkups and testing. Ezra had his 2nd birthday while hooked up for brain monitoring, but the staff at the hospital brought him a balloon and present that just made his day. They always do everything they can to make him happy in a less-than-enjoyable situation.
We are blessed that we haven’t had to do any brain surgeries and after a lot of trial and error with medications Ezra’s seizures are now less than a minute and only once every 2 weeks or so. He has delays and cannot speak yet, most likely as a side effect of the medications he’s on, but he is happy and active and brings so much joy to our life.
If it wasn’t for hospitals full of experts like Children’s Hospital of Milwaukee, we wouldn’t have gotten the treatment and research we needed to help Ezra have the best life he can. It will be a lifelong journey, but we are confident that we will never be alone.