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Time is Precious

By June 29, 2016November 27th, 2018Tracy's Blog


al fresco dinner with Hayden “stand up” paddleboarding with Wilson firepit with Jackson and the ladies

There have been some heart-wrenching delays over the years as we have worked to develop new treatments for Duchenne. Two specific holdups directly affect Charley, so they’re especially hard for our family. Charley is in a clinical trial to test a new medicine (HT-100), but dosing has been suspended twice. He hasn’t taken the medicine since late January, and we don’t expect to find out if he can start up again until the end of August. Another treatment in the works, eteplirsen, has been plagued by bureaucratic delays that have dragged on for several years. The company developing that drug has other compounds in its pipeline, but most of them (including the version that could help Charley) are stuck at a standstill until the path forward is clear for this cutting edge personalized treatment approach.

The time lost is crushing for families like ours. For some kids, a year’s delay means the difference between being able to walk vs. full-time dependence on a power wheelchair. For others, a month makes the difference between a teenager being able to brush his own teeth vs. relying on an aide for assistance with the most basic daily tasks. Time is muscle, and both are precious beyond measure.

It gives me great comfort to know that the time Charley does have, he lives to the hilt. This summer is no exception. No matter that most of his friends are bussing tables, caddying at local golf courses, and mowing lawns to save up for college expenses or a first car. No matter that his cousins and sister are off at sleepaway camp. He doesn’t waste the time he does have dwelling on loneliness, sadness, or anger. He’s got hotdogs to roast at the firepit, a friend’s paddleboard to hitch onto, and concert tickets to track on Stubhub.

I’m frankly amazed by his vivacity, and incredibly grateful to the friends and family who help Charley make the most out of every single moment. He even has a friend accompanying him to Cincinnati Children’s Hospital in July for his next visit to the neuromuscular clinic. When this friend offered to join us, I explained that it would be three long days of hospital testing. His reply: “That actually sounds like fun.” We’ve got a college-age cousin visiting this week from New Jersey for the sole purpose of spending time with Charley. That means watching movies, cooking dinner and floating on a raft in the lake instead of doing what he would normally be doing this week, which I think would probably be more along the lines of meeting up with friends, drinking beer, and flirting with girls.

Watching Charley live life the way he does presents a paradox for me. On the one hand, it makes me want to spend each and every minute with him as he soaks up every ounce of life. But at the same time, it deepens my determination to give everything I’ve got to aggressively advancing new treatments that will allow him to live a longer, healthier life. But Charley’s story and our story is — after all — about making the impossible happen. Making a paradox work. For Charley’s Fund, making the impossible happen has been changing the story a doctor tells you upon diagnosis from “I’m sorry, there are no options” to “There are many clinical trials underway and more to come” in just ten years’ time. It’s been hearing people say “you probably can’t do that” and showing them we can.

Charley drums up activity, enjoyment, and meaning no matter how heavily the odds are stacked against him. Broken hip? No one around? Can’t hike, bike or play sports? No matter — he connects with friends and family, he pursues his interests with a vengeance (shopping #1 and eating #2), and he lifts others’ spirits with his infectious laugh. He understands the value of a day, which is why we are so determined to give him many, many more of them.