How did Carlie's ten cents make a difference? Nine year old Carlie joined her mom, dad, grandparents, uncles and aunts and a lot of friends at Rosa Mae’s Café in Thomasville, NC. She wore a blue Huntington’s t-shirt and carried dishes, poured iced tea, wiped tables. And on that cold, rainy night it was full to overflowing—with families who know the story of Carlie’s dynamic grandma with Huntington’s disease. They came not just to donate money but to celebrate a family that is living proactively with Huntington’s disease.
Because this brain disorder is hereditary, each child of a parent with the defective Huntington gene has a 50% chance of inheriting the disease. What starts out as small missteps and a flare-up end up taking a person’s ability to feel, think and move. Eventually, they become totally dependent. There is no treatment or cure.
Carlie’s dad is at risk, and if he carries the defective gene it can go down the line.
But optimism and hope there was that night. When the counting was over at 10pm, the packed house had donated a total of $2,423.10. Noone ever expected such a whopping sum in that small café. And all were especially curious about the 10cents.
The 10 cents? Carlie had pulled it out of her pocket to donate to her Grandma’s fundraiser. When asked if they could round it out to an even amount, Carlie insisted her $.10 be included. And as it turned out, it made the biggest difference of all.
The NC Chapter of Huntington’s Disease Society of America is working overtime to start more support groups across the state, to raise awareness of the excellent resources and care, and to advocate in Congress for the HD Parity Act so families don’t have a 2-year wait for Medicare. Lots to do!
To learn more about resources and services visit www.hdsa.org and www.hdreach.org.