“You cannot see sisterhood, neither can you hear it nor taste it. But you can feel it a hundred times a day…” –Anonymous
Madison and Reagan Sames are young student athletes who love singing to Taylor Swift and Justin Beiber as they get ready for school. However, they carry a burden that no one could ever imagine—their sister Hannah suffers from GAN. An orphaned rare disease also known as Juvenile ALS, Giant Axonal Neuropathy (GAN) appears in children, slowly robbing them of their ability to walk, chew, and talk—ultimately taking their lives in their early 20′s.
Hannah, only 9, is already walking with leg braces; however, her sisters’ support is more powerful than the disease she battles every day.
Madison and Reagan fight the fight against GAN working to raise funds for research for a cure. And it’s working. Hannah’s Hope Fund, the GAN advocacy group begun by Lori and Matt Sames has raised over $5 million in under five years. With FDA approval for a gene therapy clinical trial to begin in August, they are potentially on the verge of a cure. And not just a cure for Hannah and children with GAN, but scientists believe a successful gene therapy treatment for GAN could be a link to a cure for other neurodegenerative diseases.
Reagan and Madison help Hannah daily with simple tasks such as combing her hair and putting on her leg braces, proving that the bond between sisters is stronger than this terrible disease. They also share their parents’ time which is mostly focused on Hannah.
“She is our sister and we will do anything that we can to save her,” Madison said, “We are not only fighting for Hannah but we are fighting for all the other siblings of kids with rare diseases who don’t know how,” says thirteen-year old Madison.
These two young girls demonstrate strength and compassion beyond their years and serve as incredible role models to Hannah and their peers. They are also great ambassadors to teach your readers what it means to be a fearless sister. A sister’s love is undying. Madison and Reagan’s love holds Hannah up, not her braces. Please help us show your readers the power of sisters and that it can fight anything, even a rare disease.
For more information on our story please visit Hannah’s Hope Fund’s website.
*These words are not my own, this post has been published on request of another party.