Our hearts are heavy with the news of Hannah’s passing on Sunday morning. Hannah taught a lot of us about bravery and how to “fight like a baby.” At such a sad time, it’s good to be reminded that the world is a better place because of Hannah.
If you live in or around Levittown there’s a good chance you’re familiar with the Hope for Hannah cause. Hannah Ginion was born in January of 2013 with Krabbe disease, a degenerative condition for which there is no cure. Since discovering Hannah’s condition her parents, Vicki & Justin, have waged a successful social media campaign in order to raise awareness of the disease.
Last year, October 2013, Hannah with her parents and a group of supporters boarded a bus bound for Harrisburg. Their mission was continued awareness, as they hoped that legislation would be passed that would make early testing for Krabbe mandatory in Pennsylvania, as it is in many other states.
In October of 2014, Governor Tom Corbett signed the legislation known as Hannah’s Law. Now, because of Hannah, children born in Pennsylvania with Krabbe will have a fighting chance at a healthy life.
Unfortunately, Hannah’s fight is over, but she will always be remembered as a hero. What started out as Hope for Hannah has become Hannah giving hope to children in PA born with Krabbe.
We tagged along on that trip to Harrisburg last October and took the video above. We thought that it would be important to share the video in order to contribute to the continuing awareness of this devastating disease. (our apologies for some occasionally unsteady camera work)
This video begins with an interview with parents Vicki and Justin. At the 2:14 mark, Vicki addresses the crowd gathered in that capital building and courageously tells her family’s story. Also, at the 9:12 mark Jim Kelly addresses the crowd. The hall of fame quarterback’s son also passed due to complications of Krabbe and he gives an inspired speech in support of legislation and the Hope for Hannah cause.
Our community will never forget the bravery that Hannah showed us on a daily basis. Our thoughts and prayers are with Vicki, Justin and the rest of their family. Rest easy, sweet Hannah-bear.