Nothing can tell our story better than what I have documented on our blog. Traveling back through time re-reading the words that I once typed with tears streaming down my cheeks. Today I am proud to say that we are stronger family than we once were. We are a family that consists of myself, the Mom, my husband, the Dad, our oldest son, Blake A.K.A the Best Big Brother ever, our middle son, Dolan A.K.A the Comedian, and our youngest son, Layne A.K.A the Baby.
Layne has been a fighter since conception. We were fully prepared for a miscarriage and he continued to scare us throughout the entire pregnancy, but alas, an entire month early he made his arrival! He was perfect! Then 7 months came and these twitches began, twitches that would rumble through his entire body, but they would last for just a second or two, no longer than a minute.
We made our first trip to Children’s Hospital of Pittsburgh where we learned that Layne was having seizures due to tumors in his brain and than he also had tumors in his heart. The tumors, the seizures, and some birthmarks all led to the diagnosis of Tuberous Sclerosis. Tuberous sclerosis or tuberous sclerosis complex (TSC) is a rare, multi-system genetic disease that causes non-malignant tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. A combination of symptoms may include seizures, developmental delay, behavioral problems, skin abnormalities, lung and kidney disease.
So far we have adjusted and led a pretty normal life this past year! Layne is thriving and doing well. We have only noticed a few behavioral issues that we feel are relative to his diagnosis. We haven’t had any further testing to see if any new tumors have developed yet. Our next upcoming appointment is this August!
I have turned my worries over to God, they say Tuberous Sclerosis is the minefield of diseases, I’m not sure what tomorrow will bring and I know that worrying what the future holds for us isn’t the life I want my children to live.
Hope is in OUR genes!