REXFORD - Five-year-old Hannah Sames is battling a rare, debilitating neurological disorder, but she isn't alone in her struggle.
The people of the North Country and several areas across the state have been by her side since she was diagnosed with giant axonal neuropathy in 2007. Hannah, the daughter of North Country natives Matt and Lori Sames, remains positive through it all, said her father, despite the challenges GAN places on her mobility.
"Overall, she's doing pretty well," said Sames. "We've noticed a little slip in her balance, which is consistent with the disease."
However, Hannah played tee ball for the first time last spring, he said, giving her much enjoyment and time to have fun like an average kid.
"She loved it," Same said. "She fell down a bit but she picked herself up, dusted herself off and wanted to keep going. She's just an amazing little kid."
The Sames family hasn't sat idly by while Hannah suffers. Last year, Hannah's Hope Fund, a 501(c)(3) nonprofit organization, was established with the mission of finding treatment and a cure for GAN.
Though finding a cure for their daughter's condition is their first priority, said Sames, Hannah's family wants to do whatever they can to help anyone with GAN.
"Our little organization is the only one in the world for this disease," said Sames. "And, it's not just about one child; it's about every kid in the world who has this disease."
Money raised for Hannah's Hope Fund has already begun to provide research funding to institutions including Stanford University, the University of North Carolina at Chapel Hill and New York-Presbyterian Hospital in New York City. The fundraisers held in the Rexford-Albany area and here in the North Country are critical in continuing research, said Sames.
To that end, the Sames family will host its second annual Hannah's Hope Fund Benefit Dinner this Sunday, July 19, at the Rainbow Wedding and Banquet Hall in Altona. Though last year's benefit dinner had an overwhelming turnout, Sames said he and his family will be thankful for whatever response this year's dinner gets, given the troubled state of the economy.
"The fundraising environment is much tougher than it was," said Sames. "We'll be grateful for anything people can do. We'll do the best we can do."
The roast beef dinner will be held from 11:30 a.m. to 2 p.m., with adults charged $20 each and children ages 6-12 charged $10. Children ages 5 and younger will be admitted free.
The event will include a live auction by Gary Phinney and entertainment provided by G & B Special Effects.
For more information, call Carrie Favaro at 293-7643 or Earl Burnell at 563-6944 or visit www.hannahshopefund.org.