BENEFITING: National Tuberous Sclerosis Association Inc
EVENT DATE: May 15, 2016
Kathleen Eisenbeis wrote -
Three days after he was born Ethan had an MRI that confirmed his diagnosis of Tuberous Sclerosis. This was after a normal, healthy pregnancy and caught us completely off guard (besides a slight irregular heartbeat in utero which we were told would go away after birth). To say we felt like we got hit by a bus is an understatement. We, nor anyone that we know had ever heard of TS and that is still the case when it comes up, including those in the medical field. Tuberous Sclerosis is a very rare genetic disorder that is caused by a mutation in the genes, in Ethan's case it was spontaneous, and it causes tubers (benign tumors) in the brain, heart and kidneys typically followed by a healthy dose of other symptoms including seizures. When Ethan was 7 weeks old he had his first seizure. Because of his diagnosis we weren't totally shocked, but to see the truth of the diagnosis show itself like that was our first dose of reality (he looked like a normal, healthy baby otherwise). Luckily we were able to get the seizures under control pretty quickly.. we were relieved. Until New Years Eve 2013 - Ethan was now 6 months old - we were at a friends house celebrating the start of a New Year (a happy time, right?) when Ethan started having infantile spasms, the next 'thing' we were reluctantly expecting but praying he might avoid. Spasms are like a seizure but worse. After 6 months of a very strong medication which made him 'zombie-like' he was thankfully over the spasms. Deep Breathe. Cutting to the present... Our little guy has been through endless doctors appointments, EEG's, EKG's, Sonograms, Eye appointments, MRI's, pokes and prodes to last a lifetime for a normal person. But this is his and our 'normal'. Right now we are struggling to control his current seizures - it's a process. Watching your 2 year old have a seizure is heart wrenching as a Mom. It takes a piece of you every time. You feel helpless and you feel so sorry that your child has to endure it. But, we are blessed because our Ethan is Resilient and Brave and Amazing. I can't express how much I love him and his big sister Hayley. They are my world. With all of that said, two years after Ethan's diagnosis I was finally in a place where I felt ready and the push to do my part as a TS parent to Raise Awareness & Funds for further Research. For me, running has always been apart of my life so it was the first thing that came to mind when I thought about how I could contribute... Run - for - Ethan & TS. It also hit me that not only am I running for Ethan but for Hayley too, since she will be growing up with a sibling with the disease. It will affect her life tremendously. She is only 4 and it already has (she is usually tagging along to doctors appointments, picking up medicine, witnessing his seizures, side affects of medication - to name a few), but she has been gracious and understanding which we are very grateful for. She really is a great big sister. For us, this is just the beginning of our journey. I am thankful that I have an amazing partner to fight this battle with - we make a pretty good team. Picking the other up when one is down. To have someone there who understands completely what you are going through is HUGE. With Tuberous Sclerosis each and every case is very different and unpredictable. You really don't know what to expect at all. So every milestone that Ethan reaches is a celebration for us - even the smallest one's - like pointing to things or giving kisses. They all mean so much. Some of these things can be easy to take for granted. We didn't know if Ethan would walk, but he did and we are grateful. We don't know if he will talk - and we are still working on that - only time will tell. Our biggest goal is to provide the best for our little Ethan and to make sure he is HAPPY. And we want the same for other TS families. They have come along way, but with how rare the disease is there is limited funding and support. I hope to change that one step at a time. Please help me on my journey to help my son, my daughter, our family and all those fighting this disease.