Hannah Sames, 4, is similar to most young girls. She likes to sing, dance and play outside, but unlike her 4-year-old friends, Hannah does not have a lifetime to grow up.
Diagnosed with a rare genetic disease in March, Hannah’s parents, Lori and Matt, of Clifton Park, have sprung to action on a quest to find a cure for Giant Axonal Neuropathy, a disorder afflicting fewer than 200,000 people in the United States.
Known for her blonde curly hair and warm smile, Hannah is spreading hope to all who know her through Hannah’s Hope Fund, a foundation set up in her name to raise money for research of treatment and cure of the disease.
The Sames family has also received an outpouring of support from the community and country.
Some support has come in the form of the organization of fundraisers. Almost every week there is an event taking place for Hannah’s Hope Fund.
Their story just really touched me, said Kate Cross, owner of Tiny Tots Tea Room, who organized a fundraiser at her playroom Saturday, Aug. 2, in Clifton Park.
Giant Axonal Neuropathy is a neurodegenerative disorder affecting a person’s central nervous system. Most of those with the disorder do not live past young adulthood.
The first signs of the disease were exposed when Hannah was 2 years old and her grandmother noticed the arch of her foot rolling inward, but doctors brushed off the observation.
Signs of the disease began to pop up over the next two years, but no one could put their finger on a diagnosis until a doctor skimmed through a large textbook on neuropathy and came across a photo of a boy with kinky hair, a defining trait of the disease.
The shock, anger and disbelief that followed Hanna’s diagnosis turned into action when Matt Sames decided this family was going to be the first to find a cure.
In the five months since beginning their quest, the Sames have raised money and awareness of the disease.
They found a researcher at Stanford University, who had studied the disease before her funding ran out. In an online video about Hannah’s struggle with GAN, the family said they are lucky to have found such a researcher, and they are hopeful her research will benefit Hannah.
For information about Hannah’s Hope Fund, visit www.hannahshopefund.org/data/.“
