Guest Post by Jim Kelly, President and Co-Founder, Hunter’s Hope Foundation; Retired NFL Quarterback and Hall of Famer
Last month, I had the privilege of participating in APHL’s 50th Anniversary Celebration of Newborn Screening. I also spent time on Capitol Hill, meeting with members of Congress, senators and legislative staffers to gain support for the Newborn Screening Saves Lives Reauthorization Act.
My son, Hunter (2/14/97-8/05/05), was affected by a rare genetic disorder called Krabbe Leukodystrophy. When Hunter was born, there was no newborn screening test for Krabbe. By the time he was finally diagnosed, we were told there was no treatment, no cure, and that he would live to be about 13 months old.
When my wife, Jill, and I started Hunter’s Hope Foundation shortly after Hunter’s diagnosis, we knew it was too late to help our son. But we wanted to help other families like ours by funding research for improved treatments and ultimately a cure of Krabbe and similar disorders. Through Hunter’s Hope, I’ve also become an advocate for newborn screening – not just for Hunter’s disease, but all diseases where early detection can make a difference.
While in DC, I had several meetings with legislators whose support will be instrumental in moving the Newborn Screening Saves Lives Reauthorization Act forward. Additionally, I hosted a briefing to discuss this essential legislation and the importance of newborn screening to legislative staffers, as well as members of the media. At the briefing, I was joined by Representative Chris Collins (NY), Representative Peter King (NY), and Representative Lucille Roybal-Allard (CA), one of the bill’s introducing sponsors.
I was also joined at the briefing by Jana Monaco and her children Stephen (16) and Caroline (11). Stephen was diagnosed with isovaleric acidemia as a toddler. By the time he was diagnosed, it was too late to reverse the physical and mental impairments he suffered as a result of the disease. Caroline was diagnosed with the same disease at birth through newborn screening. Because she was diagnosed and treated early, Caroline is now a healthy 11 year-old.
Children like Stephen and Caroline are the reason we must continue the work that was started with the Newborn Screening Saves Lives Act of 2008. Prior to 2008, there was a huge discrepancy in the number of diseases states included in their newborn screening programs – New York was only screening for 11 disorders while Mississippi was screening for over 40 disorders. I’m proud to say that today New York screens for almost 50 diseases including Krabbe.
I can’t tell you what a blessing it is to meet parents who introduce me to their son or daughter saying, “If it weren’t for newborn screening, my child wouldn’t be here today.” In fact, the first child to be diagnosed and treated with Krabbe disease through New York’s newborn screening program started Kindergarten last month.
Although progress has been made, there is still more work to be done.
I let our nation’s leaders know that the Newborn Screening Saves Lives Reauthorization Act must be a priority. This is something we can do right here at home to make sure that all children born in our country are given the best possible chance at a healthy life.
All children should be given the chance to dream like I had as a little boy. I saw my dreams come true when I became an NFL quarterback, but my son, Hunter, and so many kids like him never had the opportunity to dream. I, together with my wife, Jill, am committed to doing everything that we can to make sure that all babies are screened for the maximum number of diseases possible at birth so that no one has to suffer the way Hunter did.
You can join me in this effort – click here to let your lawmakers know you want them to support this important legislation.
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