Tuberous Sclerosis: A Father’s Journey

As the father of a healthy, exuberant 3-year old, Mike Levinstein was looking forward to the birth of his second child. The arrival of Eitan meant a brother for older sibling Jonah, and Mike and his wife Leah settled into the routine of raising their two boys.

All children develop differently, so it wasn’t until Eitan was about a year old that Mike realized something was off. As Eitan started crawling and pulling himself up, the inevitable happened. Eitan fell, just like other kids. But what wasn’t like other kids was the dazed look on his face that seemed to read, How did I get on the floor? Mike also noticed that Eitan would go limp while he was carrying him, almost like a marionette that needed strings to hold him up. And, at times, when Mike and Leah tried to make eye contact with him, Eitan wouldn’t look back for about 10-15 seconds and these symptoms began happening more often.

What Mike and Leah didn’t realize was that Eitan was having seizures. They thought seizures were more outwardly visible like convulsions that wracked the entire body.  They consulted their primary care physician and at first there were no answers. But as they were leaving, Eitan had another “episode” and they went back inside. Eitan was immediately referred to a neurologist and admitted to Children’s Hospital in Akron, OH (where they live). After an agonizingly long wait, the bad news arrived. Eitan has a genetic disorder called Tuberous Sclerosis (TS), a rare multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin, and can cause seizures, intellectual disability, developmental delay, behavioral problems, lung and kidney disease. TSC is caused by a mutation of either of two genes, TSC1 and TSC2, which code for the proteins hamartin and tuberin respectively.

Mike and Leah were advised to stay off the internet so as to avoid the worst–case stories.

In the beginning, before the seizures were controlled, Eitan had to wear a helmet. He has undergone further testing to discover the severity of his condition and although his seems to be the mildest form, life for this family is still full of complications.

Eitan, who turns 5 in March, no longer wears a helmet. But he has recently been diagnosed Autistic which bring in a new round of issues. Although Mike is concerned about his son being labeled, the diagnosis has also been benifical. He is now in a special school that allows him to get extra services from the state and be in a classroom with a special needs teacher.

Because Tuberous Sclerosis is a genetic disorder, having another child was a concern. Leah was tested after Eitan was born, and two years later, they had a healthy girl, Ellie. In the near future, Mike, Jonah and Ellie will all be tested as well, giving the entire family the peace of mind that comes from knowing the results.

Eitan doesn’t know he is different than his siblings. He does know he takes medications to help his brain and his siblings don’t. He and his older brother squabble like most brothers.  Although Jonah is keenly aware that Eitan is different, he doesn’t really know why yet.  Eitan and Ellie (now 2 and a half) are closer both age-wise and developmentally. Mike notes it is sometimes painful to see her surpassing Eitan in some areas including potty training and going up the stairs every other leg, as well as jumping.

There are also issues with speech. Eitan usually takes a little time to think of what he wants to say. Mike and Leah aren’t sure if this is part of TSC or just because he is 4-12. His gross and fine motor skills are behind as well as are his social skills, but he excels at puzzles and he loves super heroes and is often wearing a cape.

The life expectancy for children with TS varies with the severity.  With proper medical care they can grow up to be adults and live a great life.  However, organ function can decrease as they grow older.

There are no other families in Akron that deal with TS and Mike and Lean have found the best clinic providing coordinated care for Eitan is in Cincinnati. There they have access to a cardiologist, nephrologists, neurologist and physical therapist, which allows him to have multiple appointments at one visit. Mike gives his wife Leah credit for knowing what to ask and for having a medical grasp on the details.

Help does come from the National TS Alliance that lobbies for funds for research and support. Every four or five years, they hold an International Convention attended by doctors, researchers, parents, grandparents and teens with the disease. Leah and Mike’s mom attended the last one in D.C. and made some great connections that will help them help Eitan.

Recently, the AEPi Fraternity at Kent State for which Mike is the Advisor, donated a generous amount from their fundraising efforts for Eitan and TS. The TS Alliance also held a walk in October of 2014 to raise funds as well. It is that kind of support that keeps Mike, a Success Coach at nearby University of Akron hopeful and full of gratitude.

What will Eitan’s future be like? Truly, we have no idea what anyone’s future will be like, Mike notes. We all have to live in the moment and give our kids as much opportunity and support as possible. But, he also says it is hard not to worry about the “What Ifs”. Will he be able to go to kindergarten or have a Bar Mitzvah?

He looks normal to me, he says. Everything though is under the surface. As a parent, my kids are perfect. You don’t see flaws in your own child.

Mike thinks he should probably see a therapist to help him process the emotional and philosophical ramifications of Eitan’s diagnosis. “It’s painful seeing your child struggle and painful imagining his future struggles. I need to deal with that so I can be the most supportive parent I can be for him and our other kids. “

Not everyone who has a child with an illness that holds them back or makes them different, views the situation in the same light that Mike and Leah try to. “Some parents find shame, I don’t allow that to enter my world. Knowledge is the best way for my son to get everything he needs and be the best he can be.”