I had been an obstetrical nurse in a high risk unit for 13 years when I noticed our daughter of 4 months experiencing seizure like symptoms. I was in disbelief, pacing the hallways for several seconds with an acute awareness that what I had witnessed was not normal and was indeed a seizure. Our pediatrician sent us directly to Emanuel Hospital and after several tests including an MRI and EEG, she was diagnosed with a disorder called TSC or Tuberous Sclerosis Complex. The diagnosis came after we were asked by the neurologist to come into a private hospital room directly across the hall from our sleeping little girl, heavily medicated from her first of many seizure medications. I don’t think that I will ever forget that moment when my husband and I asked, “Are you telling us that there is no cure?” The answer was devastatingly, “No.” Time stopped for us at that moment. Pain and intense concern for our daughter’s well-being and quality of life hit us like an emotional tidal wave. We immediately thought of our six year old son, who was in the care of one of his loving grandparents, while we took in the troubling news. How would this life change affect him?
TSC is a generic disorder that causes benign tumors to grow in the brain and other vital organs such as the kidneys, heart, eyes, lungs, and skin. At least two children born each day will have Tuberous Sclerosis Complex. The prognosis for individuals with TSC depends on the severity of the symptoms. Individuals with mild symptoms generally do well and live long productive lives, while individuals with the more severe form may have serious disabilities. Scientists hope knowledge gained from their current research will lead to new avenues of treatment, methods of prevention, and, ultimately, a cure.
Sophie had a challenging first two years of her life, with daily seizures, frequent trips to the hospital/specialists, and delayed development. There is hope though. After two brain surgeries at UCLA Mattel Children’s Hospital, Sophie is virtually seizure free! With the support of family/ friends, medical intervention, and prayer, she is progressing in her development everyday and enjoying life immensely. With a parent in the classroom, she will attend mainstream preschool this fall. She is a joy to us all. Her big brother loves making her laugh with his nine year old sense of humor and provides a great example of what it means to be a regular kid.
Unfortunately, Sophie does have other tumors that can cause all kinds of calamities. We continue to think positively that things will remain as good as they are now. In the event that they do not, we hope to rely on the medical advances through research that provide hope and quality of life to so many individuals with TSC. Please feel free to make a donation by visiting our FirstGiving page at http://www.firstgiving.com/fundraiser/jami-flicker/step-forward-to-cure-tsc-tigard-or?fge=ask.
Kasey, Jami, Jaden & Sophie Flicker