When she learned that her infant granddaughter, Isabel, might have tuberous sclerosis complex (TSC), Diane McSwain went into warrior mode. Doctors suspected TSC even while her daughter, Kelly, was pregnant. Diane stayed through Isabel’s delivery, in case of any emergencies. She has helped raise Isabel ever since. Kelly credits Diane and the rest of her tight-knit family for getting her through the toughest times with the disease.
Isabel, now 10, has been profoundly affected by TSC. “Wherever we take Isabel, whether it’s a TSC Alliance event, or school, she’s the most severely impacted kid in the room,” Kelly says. “And that’s hard.” Diane also finds it difficult to listen to other grandparents discuss their adventures with healthy grandchildren. “But Isabel is such a joy, such a happy kid. It is wonderful,” she says.
Diane believes it is critically important to support other families in the same situation. “I couldn’t change Isabel’s diagnosis, but as a grandparent, you can try to enhance the community. They will care for your loved ones into the future.” Early on, Diane strove to help those who lacked the resources and support to obtain the best possible care. She began fundraising for Bcureful, the TSC Travel and Lodging Patient Assistance Program. The fund provides financial assistance to individuals with TSC for travel and lodging expenses associated with treatment and participation in research studies, as well as out-of-pocket costs.
Over the past eight years, Diane has raised nearly $800,000 for Bcureful. Fundraising isn’t as hard as it seems, she says. “It’s just a question of
reaching out to friends, some of whom I hadn’t talked to in years. One phone call after another blossomed into something much greater. Anybody can do it.”
The family pins great hopes on the future of TSC research. “Ultimately, we hope that there can be a cure for TSC,” says Kelly. “But even if there is one, I don’t know what that means for Isabel at this point.” She is grateful, however, for the progress that has been made just during her daughter’s short lifetime. “Isabel was in a research trial for everolimus when she was 13 months old to help her seizures. Now the drug can be prescribed as soon as birth or during pregnancy in some cases.” Diane believes it is critical to continue funding TSC research. “Anything we can do to stop another child from going through what Isabel has is a great thing.”
For now, Diane enjoys watching her granddaughter grow up. Isabel loves swimming and riding along in a Wike, with her dad on his bike. “Some things are becoming a lot more challenging as she gets bigger. I have a harder time lifting her now. She just wants grandma hugs, so it’s hard. But we’ve done a really good job and she’s very lucky.”
Help the TSC Alliance accelerate TSC research by donating to the 50 Forward Fund!