Hannah's Hope Fund
Local Parents Of A Young Girl Who Has A Rare Disease Seek Out Support From The Community
Desperate parents from Rexford NY are on a quest to save their daughter’s life from a rare neurological disease. On March 24, 2008, Hannah Sarah Sames was diagnosed with Giant Axonal Neuropathy (GAN). She is just four years old.
When Hannah’s parents learned the diagnosis, they wanted to know what any parent in their situation would want to know... is there a cure? The answer was grim. There is no cure for GAN. There are no treatments. There are no clinical trials. There is no ongoing research.
Diagnosed with Giant Axonal Neuropathy (GAN) in March 2008.
Life expectancy for GAN sufferers is in their second or third decade of life. If left untreated, Hannah’s disorder will worsen, leaving her completely paralyzed with trouble eating and breathing as she gets older. She would likely not see the age of 40.
The rarity of the condition has made it difficult to find other sufferers, but Hannah’s parents were able to connect with other families across the globe who are dealing with GAN. Joey (21) and Mike (24) are brothers from Florida who were diagnosed with GAN as young boys. Their condition started with an awkward gait and frequent falling down, much similar to Hannah’s current symptoms. Now, both men are in wheelchairs with breathing and feeding tubes to help them combat this degenerative disorder.
Hannah currently has to wear leg braces on her shins to help her walk. Her parents are scared about the future with no cure or treatments available for their little girl. They started Hannah’s Hope Fund to raise money and awareness to help begin research to find a cure for GAN.
To learn more about Hannah’s story or to make a donation, visit HannasHopeFund.org.