For nearly five years, Tracy Wirtanen wondered what was wrong with her son. He had spots on his body and underwent numerous tests. Finally, doctors determined that Sami had neurofibromatosis or NF.
"It basically means your nerve suppressor doesn't work properly, so virtually every nerve cell in your body has the potential of becoming a tumor," Tracy explains.
The genetic disorder affects 1 in 3,000 children. The tumors can grow anywhere on the outside of your body and on the inside including on the brain and spine. They can be life-threatening and painful.
"Two weeks ago he was in the ER, because he had so much pain. He was unable to walk and he was crying."
With few treatments and no cure for NF, Tracy created the Littlest Tumor Foundation in Appleton in 2010.
Through the Sam I Am Walk-Run and an annual golf benefit, along with other fundraisers, she's able to put on a wellness retreat for families dealing with NF.
"One of the little kids said what he likes the best, 'I fit in. I finally fit in.' Another one said, 'I met my first friend.'"
With many NF children dealing with learning issues as well, the retreat also provides support for parents. Tracy remembers the feedback she received from one mother in particular.
"She spoke about how this was a place where she could come and speak freely about what's happening with her child, with people who would understand."
But the Littlest Tumor Foundation reaches beyond Northeast Wisconsin.
Foundation volunteer Jolene Ducat says, "She had her visions on how she wanted it to grow, how she wanted to take it to the White House, which she did."
Tracy and Sami shared their story with President Obama and, with the help of Congressmen Reid Ribble and Mark Pocan, she's become a voice on Capitol Hill. She's returning to Washington DC in December to take part in an educational briefing.
"Ultimately, we want to find a cure," said Jolene, who works tirelessly alongside Tracy to push for more funding for research. "It could happen to anybody. Why not me? So why not step up and try to make a difference?"
It's an effort that's only intensifying with each and every day to help Sami and so many other children, who one day may live in a world free of NF, thanks to the Littlest Tumor Foundation.
If you'd like to help the cause, the foundation just launched its Thanks for Giving campaign where they're challenging 3,000 people to each donate $10 to support NF advocacy, wellness and research.
Click here for more information.
