After years of fundraising, local girl to receive potentially lifesaving treatment

REXFORD, N.Y. (NEWS10) – A young girl from Rexford is about to embark on the trip of a lifetime – one that could save her life.

Hannah Sames is fighting a rare, genetic disease, but on Tuesday, she’s traveling to Maryland to undergo a potentially lifesaving treatment.

“It’s like an 800 pound gorilla being lifted off our shoulders,” her father Matt Sames said.

The treatment is relief and hope for Hannah’s father and family. The 12-year-old is battling a fatal genetic disease that attacks the nervous system. It worsens over time, and patients typically become quadriplegic.

But, hopefully, not Hannah.

“She’ll finally get a chance to attack this horrible, horrible disease,” her father said.

Hannah was diagnosed at the age of 4. Now, eight years and $8 million of fundraising later, she’s getting the gene injections that could save her central nervous system and her life.

“Hannah’s been looking forward to this for a while, and she’s been asking for about two years, ‘How come I’m not being injected,’” Matt said.

The journey began when Matt and his wife Lori made a video in 2008 where they asked for help. From there, Hannah’s Hope Fund was formed, and support and donations began to pour in.

“A lot of hard work and generosity from our friends and our network here in the Capital Region,” Matt said.

Hannah will be only the fifth child to receive the injections. The others have shown encouraging results.

She’ll spend about two months in Maryland for the treatment, so the Sames are soaking in all the family time they can get as well as holding on to hope for Hannah.

“It’s been a lot of stress, a lot of hard work, but this is kind of the fruits of our labor,” Matt said.

Hannah and her mother leave for Maryland on Tuesday. She’ll be injected one week from Thursday and will spend 60 days there while she’s monitored.

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