Gus ‘graduated’ from 4th grade in June. It was a cute little ceremony and we couldn’t help but notice that his teacher’s voice broke a bit as she read his name. Just a few days earlier, I saw this year’s seniors graduate from Souhegan High School and step proudly into the tremendous potential of their lives. Mrs. S. may have gotten choked up because she knows that the time between now, when Gus is 11, and his high school graduation – 8 short years – are going to be incredibly difficult ones for this curious and happy little boy who she’s gotten to know this year. He may even be denied the joy that every graduate has – of looking optimistically into the future.
In that way, she felt a little of what parents of any child with a terminal illness experience every day. We are stuck between embracing every moment we have with our wonderful kids and dreading every moment that passes because it brings the inevitable closer. As she handed him his ‘diploma’ I think she may have also realized something else. The only way out of that terrible catch-22 is through hope. She sent him into the world believing that he would be able to fulfill his potential if only because, once you meet him, it’s impossible to imagine that he won’t.
In the past, that hope may have seemed naïve; Duchenne Muscular Dystrophy has proven to be a stubbornly difficult disease to treat. In the past few years, however, we have seen incredible progress. In the past few months alone, Hope for Gus has received grant requests for research involving gene therapy, stem cells, heart treatments and more. Our scientific advisors are considering each of them. Additionally, a number of drugs are going to trial, and this month, researchers began looking specifically how CRISPR gene editing technology might treat Duchenne. It’s an incredibly fertile time for Duchenne research. We just need to do two things – keep funding the good science – and keep believing we’ll save this generation.
That is why we are climbing Whitney – to raise money for research. As the tallest mountain in the lower 48, it can represent a lot: The uphill slog that researchers have had in figuring out this disease; the struggle that Gus and all kids with Duchenne face every day; the fact that we won’t stop and we will justify the faith of people like Gus’ teacher. As Marvin Gaye famously said, “There ain’t no mountain high enough…” to keep us away. Thanks Ms. S. for believing we’ll make it to the top!