Patrick and I have been married for 15 years. We live in New Orleans with our two sons, Wyatt and Wynston, and Wyatt’s service dog Wrigley. Wyatt was diagnosed with Duchenne Muscular Dystrophy in 2007.
Duchenne’s affects about 1 in 5,000 boys and while girls can show symptoms it is uncommon. It is a genetic life threatening and progressive muscle wasting disease for which there is no cure. This is caused by the absence of dystrophin, a protein that builds muscle in our bodies. Many have compared it to having ALS but in a child and the boys affected slowly lose muscle strength in their hips and legs.
At first it’s hard to get up from the floor, and then it gets too hard and exhausting to walk. Eventually the weakness moves to the muscles in their arms, upper body and neck, then moves to muscles that aid in breathing. The majority of boys affected are then confined to an electric wheelchair in their teens. No muscle, including the heart, is left unaffected.
The lack of dystrophin also affects the brain. In almost half the boys, families see one or all of the following characteristics in their child; autistic qualities, delayed learning, obsessive compulsive tendencies, ADHD, anxiety, and unfortunately, extreme tempers. In other words they can be jerks to those who are just trying to help. Add to this the standard of care has been for years only steroids and which have a tendency to magnify the behavioral problems. The behaviors our boys try to manage are sometimes harder to deal with than the physical aspects of Duchenne.
Many parents have told me “I wouldn’t mind helping my son get his socks just right, turn him just the right way in bed, get him just right in his wheelchair if he wasn’t just so mean about it.”
Luckily this struggle is being brought to the forefront and researchers are trying to figure out a way to help us and others deal with this part of Duchenne. Our family and friends can testify that this was something that we were not expecting and that it is definitely hard to deal with on a daily basis. But we get through it the best that we can.
As you can imagine, this progression can take a toll on the entire family. One of the most incredible experiences our family has had was meeting Morgan and Chelsea in May of 2018. There was an immediate connection that our entire family had with them as a whole. Wyatt, as well as Wynston, shot baskets with Morgan in the driveway, threw the baseball, and of course hit some golf balls. You see, Wyatt loves sports – and even though he can’t really play like others, he keeps pushing on. Morgan has been an inspiration to keep him going.
We also shared our diagnosis experiences. We talked of the hours, days, and weeks after the diagnosis when we were trying to understand what had just been handed to us from a doctor – someone who says you have muscular dystrophy, there is no cure, and that there is nothing you can do about this disease. We were actually told to go home and love Wyatt because there is nothing out there to help him. We digested that and then decided ‘screw this’… because there has to be some person, some company, some doctor, some researcher, or some patient who is out there trying to figure out this disease and fix it. Then when we find that someone we could build a community of people – a team – around our families to help fight back against muscular dystrophy and advocate for every other person who suffers from this ‘incurable disease’. Reading Morgan’s piece “So Damn Lucky” brought chills through my body as so many of the feelings, the research, and everything except the part about playing golf, were exactly as our family had experienced it twelve years ago.
We have not taken this diagnosis lying down.
Wyatt was diagnosed when he was just 1-year old and since then Patrick and I have researched, raised awareness and have been all over the country seeing physicians and participating in clinical trials with Wyatt. Over the past 12 years Wyatt has participated in multiple research studies and two clinical trials to help find a medication to keep him and other boys like him walking and living longer. We fly multiple times a year to the trial site and he goes through hours of MRI’s, blood tests and physical therapy tests. I am definitely not complaining, because we feel so blessed to be able to participate and help move science forward. But it does take a financial toil on our family and other families that we had not planned for.
I left my nursing career two years ago in order to bring Wyatt to and from school because he no longer could get on the bus and be able to go to appointments at home or out of state. It’s a balancing act for all of us; Wyatt with school, Patrick with work, and Wynston not feeling left out. When this journey first started the list of possible medications was very short, but the promise, the possibility and drive for finding a cure was there. The cure has always been around the corner or next year. Unfortunately we are still waiting for that ‘next year’ to arrive, although we are much closer than we were 12 years ago.
We also travel to Ohio annually to see a Duchenne specialist. We have been going there since Wyatt was 2-years old. There is no doctor in New Orleans who is up to date on Duchenne. Traveling isn’t easy with a ‘normal child’ and adding a wheelchair and a service dog with a child who not only has physical limitations but also behavioral struggles brought on from Duchenne, magnifies the TSA and airport experience.
As all parents do, we love our boys so much. Many of our friends and family members say, “Y’all are always going somewhere. Don’t you just want to stay home for a while and take it easy?”
You see, when we go to all these appointments we also try to build in something fun to the trip. We don’t want Duchenne to be a punishment. We want to make sure Wyatt is able to experience as much as he can before he can’t, and w ant his brother to be by his side enjoying it too. A long time ago a Duchenne dad said, “take the trip, do the experience. We are fitting a lifetime of experiences in 20 years and anything after that is a bonus.” Patrick and I have taken that to heart. We let Wyatt try as many things as he wants to do. He has done adaptive skiing, t-ball, little league baseball, little league basketball, First Tee Nola golf, and now playing sports for the Miracle League New Orleans.
As I said earlier, we are happy to have met Morgan and Chelsea. However we would have liked it to have been for a different reason. Many of our ‘new’ friends are part of the same community – our muscular dystrophy family, the best family you wish you never had. Morgan and Chelsea have taken this fight head on with an extremely wise, grounded, thankful and hopeful attitude, even with being given this diagnosis in the beginning of his professional golf career. Many other people would have come out of this diagnosis stage full of anger and ‘why me’ attitude, but that’s not the route they have taken. In all of our conferences and meetings with muscular dystrophy friends there has always been the unfortunate hope that someone famous would become attached in some way to help bring awareness. I know how awful that sounds but the route that Morgan and Chelsea have taken will bring awareness to this fight and we are blessed that they have asked us to join them.
I am so grateful for the chance to share our story and for you to be able to join our journey to achieve the dream of finding a cure and improving the lives of those affected. We hope that hearing our story helps you to understand the urgency of finding a cure and how much our community can benefit from what the Morgan Hoffmann Foundation is doing.
If you take anything from this then let it be this: We enjoy our life to the fullest, but every day we pray for a cure so that our little boy will outlive us.