Friday, September 07, 2007

Angel suffering from seizures may face a shorter life!

As a social worker at Children's Mercy hospital in Kansas City, Amy Dublinske of Lee's Summit had never heard of tuberous sclerosis until her youngest child was born.Yet, the disease is as common as Lou Gehrig's disease, muscular dystrophy and cystic fibrosis.When Amy went in for her ultrasound at 32 weeks, the doctors found that her baby's heart was covered with tumors. It was then that they knew something was very wrong.

After the ultrasound, Amy and her baby were monitored every week until the doctors induced labor in May 2005. It was then that newborn Kierstin Dublinske was diagnosed with TS.According to the Tuberous Sclerosis Alliance, TS is a genetic disorder that causes tumors to form in various organs, primarily the brain, eyes, heart, skin, kidneys, liver and lungs.Kierstin, now 2 years old, has more than 30 tumors in her brain, 20 in her heart, a couple in her kidneys and several in her eyes.
The doctors concluded that the tumors in her heart were stable, those in her kidneys have yet to affect her, and the tumors in her eyes cause her to wear glasses.But it is the more than 30 tumors in her brain that her parents and doctors are most worried about.Kierstin has suffered from seizures as a result of the brain tumors - as many as 50 a day, Amy said.

In her short life Kierstin has suffered from four status seizures - which are life threatening and caused her to stop breathing - been hospitalized 10 times and endured two invasive brain surgeries.When Kierstin had brain surgery in September 2006, the doctors removed a tennis ball-sized tumor from her right frontal lobe, Amy said.Before the surgery at 16 months old, Kierstin had trouble even pulling her body up.

"After the surgery it was like a miracle," Amy said. "The tumor had such a major impact on her abilities."Amy said having so many seizures made it difficult for Kierstin to develop mentally, but since the surgery the seizures are less frequent."We still do have issues and some seizures, but it's nothing compared to before the surgery," Amy said.

Now, a big concern for Amy and her husband, Neil Dublinske, is Kierstin's lack of verbal ability.But Amy said developmental delays are common in children with TS."The brain doesn't function like a normal brain would," she said. "Because of the tumors, a brain in a child with TS is all discombobulated. Nothing is where you would expect it to be."

Kierstin attends the Therapeutic Learning Center in Kansas City three days a week in hopes of developing some of her verbal skills. But, Amy said there is no way to determine if Kierstin will be verbal at all."We don't know what her future will hold," Amy said. "But now our biggest concern is her speech."Most of Kierstin's 30 brain tumors are growing slowly, but Kierstin has two SEGA tumors, which grow on the ventricles of her brain and cause fluid to build up inside her brain. These the Dublinskes must monitor closely because they "could quickly become fatal," Amy said.

As for the many tumors on Kierstin's other organs, they for the most part, are not as severe. However, Amy said the tumors in Kierstin's kidneys could cause problems as she gets older."We've been so overwhelmed with all the stuff that goes on in her brain that we have not been able to focus yet on the kidneys," Amy said. "You just have to take it one step at a time."There is no cure for TS, but Amy said she hopes raising awareness for the disease will make an impact on the research for a cure.

"We've just made it our mission to try to find a cure so other families don't have to go through what we've been through," Amy said.On Saturday, Sept. 8, the Tuberous Sclerosis Alliance of Greater Kansas City is hosting Step Forward to a Cure, a two-mile walkathon to raise funds and awareness for TS.Registration for the walk begins at 9 a.m. and the walk begins at 10 a.m. at Shawnee Mission Park in Shawnee Mission, Kan.

For more information about the walk or TS, visit


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