Wearing Purple

Rylee was 18 months when we first realized the weird "spelling" stares she was having were actually seizures. By the time she was hospitalized, they had progressed to her eyes rolling in the back of her head and her salivating. We were terrified and had no idea what was happening. This is also the first time we heard the words Tuberous Sclerosis Complex.

Jake was 11 months when we could no longer deny that he too was having those weird "staring" spells and seizures. Like his sister this also led to a Tuberous Sclerosis Complex diagnosis.

We knew Luke had Tuberous Sclerosis Complex before he was born and his seizures began at 3 months. He is now 9 years old and there has only been a couple days of his life that he has not experienced seizures. He has a combination of focal, complex partial and drop seizures.

I wish I could put into words how completely helpless you feel as your child drops to the ground or even stares off into space. There is NOTHING you can do, short of administering rescue medications, which even hose have failed at times, to stop the seizures. At one point Luke was having just under 100 seizures a day, so you can imagine the 1-3 seizures we see today is an amazing miracle. Seizures have taken much of our life as we have sat in hospital room after hospital room over the years, not to mention the many times we missed out on experiencing life because Luke was too comatose and lethargic from the constant seizures.

Throughout the year there are a few events that we participate in to try and raise awareness. Today is one of those days. March 26th is wearing purple for epilepsy. The more awareness, the more motivation for research and ultimately, hopefully, someday a CURE!

This picture is from Epilepsy Awareness day at Disneyland a couple years ago and will be the purple shirts most my crew will be wearing today!