Most people who know us ask two questions. How is Charley? and How much money have you raised? I’ve addressed the latter in my blog and on the website, but I haven’t really said much in response to the former. It’s so important — and therapeutic — for us to focus on the potential of the future. So we don’t usually go into detail about how Duchenne is affecting Charley every day of his life. But it is important for people to know how the disease is already straining Charley and our entire family.
Most casual obervers do not notice anything amiss with Charley. For the moment, he can run and jump and play with his friends. However, if you know what to look for, the tell-tale signs of Duchenne are quite obvious. When Charley gets up off the floor from a sitting position, he uses his arms to help him. He needs a push to climb up onto his bed or into the car. He tires easily, and often has to be carried if we are walking long distances. Charley’s calves are “pseudo-hypertrophied,” which means that although they appear to be very muscular, the muscles are actually being replaced by inflammatory and scar tissue.
Charley’s muscles need to be stretched twice a day to combat the contractures that result from muscle damage and scarring. We stretch him for 15-20 minutes every night. His teachers and physical therapist do the daytime stretches at school. In addition to this special service, Charley visits an occupationl therapist to build upper body strength and fine motor skils. He also sees a speech and language pathologist twice a week to help him overcome the relatively mild cognitive issues associated with Duchenne. The pathologist helps Charley with word retrieval, sentence formation, understanding directions, and other language weaknesses.
Charley swallows six pills a day and downs a pretty potent “muscle drink.” The cocktail is a combination of muscle-building and energy-enhancing supplements that we hope will retain muscle function for as long as possible. Among the pills are green tea extract, a multi-vitamin, a calcium supplement and essential fatty acids. Since there is much controversy in the medical arena regarding treatment for Duchenne, we created this “menu” by talking to doctors, nutritionists, and other parents of children with DMD. Charley also takes daily steroids, which is the only medication that doctors agree can slow the progression of DMD.
Because steroids are often associated with weight gain and water retention, Charley is on a low-sodium, low-fat, low-sugar diet. We’ve cleared out the chicken nuggets, fish sticks, and hot dogs and we limit pizza and other high-fat foods to special occasions.
At night Charley wears his “Spiderman boots,” which are really braces to help delay contractures. We need to be more vigilant with the boots. Many nights, once we have argued with him over the drink and the stretches, we are too exhausted to push him into one more thing.
On a positive note, we’ve signed Charley up for day camp this summer. He’ll be attending Eisner Camp in Great Barrington with his brother Sammy and many of his friends. The camp staff has been incredibly supportive and flexible so far. They are providing a one-on-one counselor to keep a close eye on Charley since he is more prone to breaking a bone than other children and because he tires out so easily. We are so grateful that the camp is working with us to help Charley enjoy summer camp like every other kid.
Charley gets his cast off on Thursday, so if all goes well he will be all set for his first week of camp. This week, we are enjoying a family vacation together. We’re playing wiffle ball in the front yard, going to see Shark Boy and Lava Girl, and just hanging out. Benjy and I are also spending lots of time this week on the Fund. He is working out the specifics of our first two research projects, and I am looking for money!
Thanks so much for asking how Charley is doing. The question reminds us how much he is loved, and how much people care about his well-being.