Tualatin family invites community to walk with them, raise awareness for tuberous sclerosis
Jami Flicker's daughter was 2 months old when she had her first seizure.
'Her right side tightened, and you could see it work its way up her body,' Flicker said.
A nurse, Flicker recognized the signs immediately and rushed Sophie to the hospital that night, where she was diagnosed with tuberous sclerosis complex, a rare genetic disorder that causes benign tumors to grow in the brain and other organs.
Doctors discovered nearly a dozen separate tumors in her brain, another 10 in the ventricles, one on a kidney and a few small ones on her face.
Sophie had seizures almost daily for two years, Flicker said, and the tumors in her brain stunted her speech development.
'It was like she would get excited about something and her brain would start to think about something and it would trigger a seizure,' Flicker said.
Now after two brain surgeries, the seizures have subsided and 4-year-old Sophie is like nearly any other student in her preschool class.
'She enjoys everything that other children enjoy,' Flicker said.
This Sunday, Flicker and her husband, Kasey, are helping to put on a special walk at Cook Park in Tigard to raise awareness of TSC and raise money for the TS Alliance, a group which funds research to treat - and ultimately cure - the disease.
'I want to be proactive and do what we can,' Flicker said. 'I don't want any child to become invisible. It's my job. It's something that I think about all the time - did I make a positive difference today?'
The third annual Step Forward to Cure TSC walk in Tigard is meant to raise awareness about the genetic disorder, Flicker said.
Finding a cure for TSC has implications for treating epilepsy and tumors, as well, Flicker said.
'One of our huge reasons for doing this is to raise awareness in our community. I think that it's a gift to our community to be able to support these kids,' Flicker said. 'What we are doing is inviting people to be a part of our work and our cause.'
So far, the event has raised about $5,600 for TSC research.
Sophie's team of walkers, 'Team Go Girl!' is also selling T-shirts to help raise money, as well as accepting online donations.
Since her daughters' diagnosis, Flicker said she has learned just how understanding the Tigard and Tualatin communities can be.
'We have learned about the real meaning of the phrase 'It takes a village to raise a family,'' Flicker said. 'Our neighbors have been so great. I know someone that has said they know someone who has TSC and give us names of people to call. As people are getting to know us and our family, people everywhere are reaching out and being wonderful and helping.'
On Monday night, Flicker and Sophie danced across their Tualatin backyard.
'She has some pretty awesome dance moves,' Flicker said.
But throughout the evening, Sophie says few words, choosing instead to sign most of her messages to her mother.
'It is hard for her to shape and form words, but she is able to do it,' Flicker said. 'She definitely understands more than she can express. When somebody has some kind of a difference in his or her speech, it's a learning curve for everybody. How do I play with this person or communicate? But a lot of young children seem to work with it just fine.'
Students in her preschool in Garden Home don't seem to mind her daughter's differences, Flicker said, and Sophie doesn't let it slow her down either.
'With all of the things going on in her body, she is enjoying and taking part in everyday life,' Flicker said.
This is the second year the walk is being held at Cook Park. Last year's walk drew about 250 people and raised about $11,700 for research programs, Flicker said.
'There is a need out there, and you can see the positive benefits for the community, for our daughter and for other kids,' she said. 'It's a good thing, but nobody ever said it was going to be easy.'
Whether walkers donate or not, Flicker said, it's about getting the word out about the disease.
'If you want to donate, that's great,' she said, or you can 'just come and have some fun.'
Want to get involved?
What: Step Forward to Cure TSC walk
Where: Cook Park, 17005 S.W. 82nd Ave., in Tigard
When: Sunday, June 10,
Registration begins at 1 p.m. with the walk beginning at 2 p.m.
How much: The walk is free to attend. All donations will go to the Tuberous Sclerosis Alliance to help fund research to cure the genetic disease.
How to get involved: visit http://goo.gl/ZmOqQ to register or make a donation.