speech from tackling duchenne 2022
Thank you to all of sponsors, donors, & volunteers. Please look in our program to see them all highlighted. I hope they realize what a profound impact they have on so many in the Duchenne community.
JB’s Keys to DMD was founded in the fall of 2009. JB had just turned two years old and had been diagnosed with Duchenne for less than a year. It was the spring of 2010 that we hosted our first large event. There were many, including me at times, that were unsure about how successful that first event would be. There were definitely some skeptical moments sitting around the Stevenson’s dining room table on Muskett Lane. But, we gathered at the Boston Harbor Hotel and anyone who may have been questioning the success of the event, or the future of JB’s Keys, no longer had questions. Thanks to supporters like you we have been able to make a real impact since that time. We have raised close to 3.5 million dollars that has truly changed the lives of so many young men living with Duchenne and their families.
You can hear from them in the wonderful video that Teeson Reps and Tim Llewellyn put together. Thank you to them, and to the families who were willing to be interviewed. It was a very long day last Saturday but it was, as always, an interesting time with the DMD crowd. Poor Tim and Jenna had to keep telling us to keep it down! I could have never imagined over a decade ago, this group of support that is around us. It seems cliche but it is like a family. A family with a wide range of personalities, who find humor in the unlikely life of Duchenne. It is a family you do not want to be a part of, but you are very thankful that you have them!
Aside from the change of not knowing what this organization would do, there have been so many other changes. This little boy is now 14 and has been through a whole lot. Things that you can not really fathom when Duchenne is merely a diagnosis on a tow haired toddler. He made many strides after his diagnosis. He learned how to walk, he even ran for a while. He played little league with his typical peers, he played golf he practiced running touchdowns at alumni stadium, spiking the ball and doing touchdown dances, he hiked to the top of Noanet peak, he swam out to the raft at the CBA, he learned to read.
Almost all that he has gained after his diagnosis is now gone, aside from the reading that is. I would love to say now that you can not keep a book out of his hands. But, as a couple of his teachers know, that would just be a lie.
Most of the things he gained and lost, are now hazy memories. A how the hell was that real kind of memory. Kind of like how we think about those first few weeks of covid lockdown. Did that actually happen? Did I literally wipe down every single thing that came into my home?
When I think about JB… Did he really run in the sand? Did he actually walk the halls? Did he use to hug without me having to hold up his arms? Looking at JB now it just seems like a surreal reality that we once had.
When we were filming last weekend, it was like a party. So much laughter, some vending machine shenanigans, people trading stories, and sharing exciting plans that they had coming up. And there is always the quick brain dumps of what we are finding useful at the moment, to navigate life with Duchenne .
I was recounting a story about JB and his less than supportive game viewing of Caroline as a field hockey goalie. The story is…it was one of those days. It was an away game. Good thing about away games are the accessible stands (maybe Dover Sherborn will catch up one of these days). The bad thing about away games is also ... the accessible stands.
Listen, I am not always a positive fan. When I used to film Caroline, well, you could hear me swearing softly if something went wrong. A goalie’s mother is not an easy thing to be! There are stressful moments for me, there is pacing, there are hoods over my head and ok sometimes over my eyes. What can I say, I am a Woelfel. I am not a ref asking you to leave a high school basketball game Woelfel but still. Anyway, JB, is a lot more vocal than he should be. At home games, JB keeps his distance from the field a bit, there is no birds eye view. There is also some distance from the other spectators, except a select crew that have grown accustom to his “passion”. There is also no metal to clank his metal water bottle against. This away game we were in the stands, birds eye view, with all the other spectators, including a mom who I went to elementary and high school with. Her parents also happened to be there. I had not seen them in years and boy did we put on a good show that day. A real, look how great my kids are, my life is totally under control kind of show.
Anyway, Caroline let a goal in, which as we all know, happens. She is last line of defense, the ball went through plenty of people and all that, but JB, was not in that mindset, let's just say. He yelled, I may be blacking out if he swore or not, and he pushed his metal water bottle off of his desk onto the metal stands. Kind of like that spike he used to do with a football in alumni stadium. It was very, very loud. I kicked him out of the stands and he took himself, in his power chair, to the opposite end of the field where Caroline was not in goal.
I should also mention that Caroline came off the field in a less than upbeat mood and was even more less than pleased that she had to join a car full of people in my car for a ride home. I still contend that I did not know she would be getting a ride home with me! The kind aforementioned friend's parents caught that little interaction as well.
So, I am recounting part of the story, I say he THREW his water bottle on the ground. His defense last weekend to the group…I can’t throw anything. Said with his mischievous little smirk. We all burst out laughing. We also were laughing at what the average person would think walking by the vending machine as there were 4 DMD kids with 3 power chairs and one scooter, raiding a vending machine with no caregiver in sight. I am still not really clear on the story but they had cash and a credit card, the machine was broken, but they still came back with stuff, a lot of stuff! This might sound downright crazy to laugh at things like this. But this is what we do. We take what is an unfair and unnatural life and ... laugh. We were all having so much fun, the film crew had to remind us to talk about the harsh reality of Duchenne. I am sure this is some sort of defense mechanism for all of us, I know it is for me, but we often focus on all the positives to drown out the harshness this disease.
This is why, I do not like to think much about it. When I slow down and actually think… it is heart wrenching, it is devastating and it certainly doesn't lend to laughter. And if you don’t laugh, you cry and you cant do that all the time. Its just tiring, you get a headache, you get dehydrated, everyone asks you if you are ok. The whole thing just sucks. So, I try not to do the thinking or the crying much. But, it does indeed happen from time to time and when I do it is incredibly hard.
Why is it so hard?
Because in the last decade, there has just been so much to deal with. JB has participated in three clinical trials and two studies. He has been in a partial inpatient program for mental heath issues. There are sleep studies, cardiac MRIs and on and on. In the past year alone he has spent well over a full month of days at the Duchenne clinic at UMass. I tried to think of how many PT appointments he had shared with a particular member of the audience who happens to be celebrating a big birthday today. I came up with an estimate of over 400. He has academic challenges, social insecurity and more. He puts on a brave face a fair amount of the the time, but he gets angry. He is angry that he can not be like his classmates. He wants to play lacrosse. He wants what everyone else in 8th grade wants, to just blend in. There is no blending in when you are in a power wheelchair. Perhaps thats why he gets angry at things he should not be angry at, like his sisters performance on the field. Just like laughing is easier is than crying, being angry is easier than being sad. His life can be hard. It can be exhausting and frustrating.
Everything JB has gone through changes what the goals and dreams are, and also what the goals of JB’s Keys are a little bit. When I stood up at our first event I was hopeful, so god damn hopeful.
There are a lot of amazing people, some right here in this room who are working tirelessly every day to cure this disease, and I am beyond grateful. I know so many younger boys with DMD will reap the most benefits. They are doing it, they are changing the outcome of the disease progression which was at one time unimaginable. It is amazing! But, JB still has his lifetime, 14 years battling this disease. Of course many others have been in this far longer. The battle, and all that it encompasses, changes the person with Duchenne, changes their families and changes what the goals are. I once imagined that JB would walk around a college campus, well, that is just not going happening. So many dreams, so many goals you may envision for your child is just not achievable for JB. Or at least not in the way you hoped.
I imagine that this sounds depressing to some, and to others it may seem that I might be giving up. But, in actuality, it is, in a way, freeing. While the biotechs work on treatments we are free to focus on what we should be as a family. As I accept more of what JB’s reality is and most likely will be, we focus on the here and now. We focus on what he can do and not always wishing for what he is NOT able to do. There is more time and energy put into things like adaptive sports and theater. There is maybe skipping a day of stretching to go on a hike. And there is joy in finding amusing you tube videos and “new to JB” comedians to watch. A Cheech & Chong skit is always a hit. There is celebration over finding out you get to go to camp for 2 sessions this summer.
I sure hope the treatments that are here now, and those that are coming give JB the best quality of life possible. But, I no longer think of a “cure”. I think about what is going to keep him the healthiest and the happiest he can be. Healthiest, so the treatments will positively impact him, and so he is comfortable and thriving as much as he can each day. Happiest, because isn’t that the best way to live? Isn’t that what the last couple years have given all of us, regardless of Duchenne? It has given us perspective. A global pandemic can do that. It give you perspective and realize all you want for yourself and those you love is to be as healthy and happy as possible. That is what JB’s keys is focused on as well, for people living with Duchenne and their families. And this…is where you all come in.
Your support directly impacts so many living with Duchenne to be the healthiest and happiest they can be. As for healthiest, your dollars go to the UMASS Duchenne Clinic that is a top medical facility for Duchenne. It provides coordinated care and year round support for DMD patients as well as having 6 active clinical trials, one which JB is participating in. It also goes to help families directly in financial need. The cost burden of having a child with Duchenne is immense. Your dollars go to expenses not covered by insurance. There have been families who needed help with van payments, or a home renovation. We are also working with REQ, the area’s most complete source of home medical equipment and services, to put together a virtual loan closet for equipment. There is nothing worse for example, than having something happen to your ambulatory child, like a broken leg, and getting home to realize you have nothing of what you need. This will help with that, by having wheelchairs, lifts and other devices available to loan out.
Your support also goes a long way toward many research projects we support that are focused on improving a healthier quality of life. For instance we helped fund a cardiac initiative that focused on innovative ideas that will lead to substantial improvement in the care and treatment of Duchenne cardiomyopathy. We also are looking towards improving the mental health care of people living with Duchenne by supporting national conferences like the one put on by Parent Project Muscular Dystrophy. As everyone knows who has dealt with mental health issues in their families, Duchenne or not, it can be way harder than any physical issues. Once an overlooked aspect in Duchenne, it is not getting the attention in needs.
As for happiest, we got that covered. Our educational scholarship program is flourishing with six $2,500 scholarships given out to young men this academic year pursuing their education after high school. These scholarships can go to not only tuition, but to the other expenses a young man with Duchenne attending College incurs, like personal care or transportation. I can assure these young men are happy at college, I got a pretty awesome photo of Jake Marrazzo from his mom last weekend being a typical college kid. And they and their parents are happy with the assistance as well.
We continue our robust adaptive recreation program and are looking to expand. The joy families get from enjoying their children in a way outside of the grind of doctors and home care, is truly priceless. We continue our adaptive sailing and adaptive skiing programs. Last winter, without being able to send families to ski we were able to give out thirty grants worth $500 each that went directly to people living with Duchenne in New England. They were instructed to use them as they want, to make covid winter life…better….and they did. From legos to sleds and virtual reality goggles, they were used with the exact intent they were given. We now own a terrain hopper, an all terrain vehicle that can tackle any beach and most mountains. Many families have utilized it to maximize their outdoor experience with their family member who has DMD. We are now being approached by families and supporters with more recreational opportunities that we just do not want to say no to, so we need your help to say yes. From looking into different weekends away for fishing and exploring, to the exciting sport of volt hockey we want to be there, and with your help we will be.
I am deeply grateful for your support and the support of so many who could not be in attendance in person tonight. With your help, we are able to meet the Duchenne community where we see the greatest need.
I invite you to take in the video below and celebrate being as healthy and happy as we can.
10/20/2022 10:53:51 am
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10/24/2022 03:29:39 pm
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Beth Harvey, JB's mom and executive director of JB's Keys to DMD, lives in Dover, MA with her 2 children. In addition to JB, she has a daughter Caroline. I try to keep a sense of humor and have fun, as I attempt to keep my head above water.