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Welcome Jessica! Can we begin by you telling us a little bit about yourself – including why you dedicate so much of your time and passion to The Jett Foundation and Duchenne Awareness?
I grew up in South Asheville, Avery Creek area to be specific, and graduated from Roberson, class of 2000 – woot! woot! My youngest sister has developmental disabilities and graduated from Roberson’s Progressive Education Program. Her diagnosis allowed me the opportunity to volunteer within the PEP program, more specifically the Special Olympics held at the high school each year while I, too, was in school. I have vague memories of my parents struggling to obtain a diagnosis for my sister, however, they always appeared to have great support from the school system. Never in a thousand years did I think I would be on a similar journey myself as an adult with my own child. After years of fighting for a diagnosis for our son and finally obtaining one, (of Duchenne Muscular Dystrophy) the Jett Foundation came right on time.
Did you know anything about Duchenne Muscular Dystrophy before Javon’s diagnosis? And how do you describe it now to someone who isn’t familiar?
I knew absolutely NOTHING about Duchenne prior to Javon’s diagnosis. As a matter of fact, I had never HEARD of it prior to his diagnosis. The only thing I knew of muscular dystrophy was the Jerry Lewis telethon that took place each Labor Day weekend. If I was trying to explain what Duchenne is to someone who had never heard of it (but wasn’t newly diagnosed), I would describe it as a muscle wasting disease. Your body requires dystrophin to build and maintain muscle growth. Boys (and a few rare girls) with Duchenne are born with the amount of dystrophin their body will ever produce.
After receiving Javon’s diagnosis, I dwelled in anxiety and anger for roughly two years before digging out of the hole and into a place to receive help. I began joining social media groups specific to Duchenne and sat in the background soaking it all in. It was very overwhelming taking in the different stages of life each family was in. Eventually, I joined a virtual porch nite (thanks to the pandemic!) and again, observed. I observed all these women empowering each other as they shared the good, the bad and the ugly. They laughed and cried together. They shared tips and tricks for care, updates and info to share with doctors, the latest in medical treatments and clinical trials, which chair was the best chair, which feature to request and how to fight insurance. I remember thinking, “Whew. I don’t know if I’ll ever understand all of this.”
We applied for the Jett Giving Fund in 2019 and were accepted for the 2020 season. Have you seen the price of an accessible vehicle?! Jett was going to help us obtain one. We raise half the cost and they match it at 100%! We were selected, planned an amazing BBQ fundraiser with a significant amount of help from long-time childhood friends, and the ball was rolling! Then BAM! Covid hit. How were we going to do this??? We (and by we, I mean our community and amazing group of people) made it happen through raffles of donated items and challenging each other to match donations. We obtained our van in July of 2020 and Javon was in a clinical trial by October! Right on time! We wouldn’t be where we are in our journey without the Jett Foundation. I advocate so hard for them because they truly pour back into those they serve. The families they serve truly reap the benefits of all Jett does. Jett Foundation was started by another DMD mom who just gets it.
Tell us about your son, Javon –
Javon is a typical almost 16 year old teenage boy who loves gaming, all things Marvel and Star Wars, and he listens to many genres of music. While he’s mostly a quiet, passive-observer, he is also quite a jokester and has enjoyed sharing jokes and pranking others since he was young! His all-time favorite prank that he loves to share is when he and his aunt scraped the filling out of oreos and replaced it with toothpaste and left them for his grandmother! He was probably around seven years old at that time. When Javon is asked about his journey with Duchenne and if he has any advice to share with others in the journey, he says, “Don’t let it define who you are.”
When did you and your husband, Earl, first notice Javon was experiencing symptoms… even if you didn’t know what they were?
Javon played T-ball and soccer when he was between 4-5 years old. He had huge calves and others would often comment about how fast they bet he could go. His father used to run track, so it was somewhat expected. It couldn’t have been more of the opposite. Javon had these huge calves and would give his all to run, with his little arms going beside him and his tongue out, giving it all as he ran and he was hardly moving. Concerns were brought to the pediatrician who initially blew it off as Javon being a late bloomer, although he had hit most milestones at a normal age. When brought up again at a later date, the pediatrician asked if he could ride a bike. In fact, he could. Again, late bloomer. Following my grandmother’s passing and spending time with family at her funeral, being able to observe Javon alongside his younger cousins, he was definitely much slower.
The process of getting and then receiving the diagnosis was grueling! When we returned home from that trip, I was sitting with Earl and found myself on Google where I stumbled upon the Gower’s maneuver. This was EXACTLY how Javon got up from the floor. Basically, climbing up his body. I learned about its connection to Duchenne Muscular Dystrophy (DMD). My heart dropped at the things I read. This is it. All the horrible things are going to happen to my child with a short life expectancy on top of all of it. We returned to the pediatrician with a letter that voiced all of our concerns. I couldn’t verbalize any of it without losing it. Blood tests were completed and returned with high CPK levels which is also indicative of DMD. We were referred to Duke. Blood tests were once again completed and a couple weeks later, the doctor called Javon’s father and delivered the news – “Javon has Duchenne and there is no cure. Your choice is to start a steroid or not. Either way, enjoy your time.”
There was no follow up.
There was no call to me, his mother, even after Earl asked the doctor to call me. There was no information provided as to what DMD is and/or what to expect. All we knew was what Google shared…. the WORST!
It has now been a few years and you’ve gotten Javon into clinical trials. What does something like that require of your family?
Javon is in a clinical trial that requires an infusion every two weeks. For the first 18 months of the trial, we traveled (as a family) to Atlanta every two weeks for a three-hour infusion process. Coming up, Javon has SIX appointments scheduled in October – spanning from Charlotte to Atlanta to local. It isn’t always easy navigating scheduling as it often requires changing my work schedule around. Planning travel takes SO MUCH TIME! What’s the parking like? Can we get out safely? Is the room accessible? Is the town accessible? Can we get into a restaurant? Do we need to rent a hoyer lift, shower chair? How will we transfer for toileting? It’s constantly thinking ahead and planning for the “when” not the “what-if”.
We haven’t taken a family vacation this summer because of the overall cost. I never in a million years thought persons with disabilities would have to pay SO much to do the things ambulatory individuals do for free! For example, we paid $300 to rent a beach wheelchair for five days. FIVE DAYS and it didn’t even offer Javon independence. He still had to rely on us to push him on the beach. Frustrating! Very frustrating! I won’t get started on transportation, ability to fly (or lack there of). Did you know individuals who rely on wheelchairs (especially those with electric wheelchairs) aren’t able to stay IN their chair on a flight?! Nope. Instead, they have to be transferred to a different chair and/or seat on the plane and PRAY their $50k wheelchair still works once it’s unloaded at landing. We’ve never flown for this reason.
The demands on any parents, especially those with full-time jobs, can be intense. Emotional burnout for families managing a child’s illness is compounded. From your now lived-expertise and experiences, what resources would you like to see more readily available?
Caregiver burnout is a real thing! It’s even more real when this is your child and you’re constantly advocating and/or fighting for basic needs. While working full-time, I also spend many hours each week on the phone (on hold) with the insurance company, pharmacy and/or doctor’s offices. There are several resources available for families navigating Duchenne, the Jett Foundation, Parent Project Muscular Dystrophy and Cure Duchenne are a couple of them. The best advice I have for parents seeking resources with ANY diagnosis, is to find a group of parents experiencing the same thing – THOSE are your people. Family and friends will try to express an understanding, however, they will never truly understand what your day to day experiences are like. However, those families experiencing the same thing will help empower you with the knowledge and support you need to move through each day.
I would LOVE to see North Carolina (and every state, actually….) become a paid caregiver state for children under the age of 18. If offered a decent income, this would not only offer the flexibility many parents require to navigate appointments and other care needs, but would also offer continuity of care. An increased continuity of care means the cost spent on hospital visits for medically fragile children decreases, thus saving the state significant amounts of money.
I would also LOVE to see families getting the proper support and resources they need soon after a diagnosis, rather than only having other families to lean into. This is part of what has motivated me to return to school to complete my MSW degree – so others don’t experience the same thing we did.
How can people get involved, help, learn more?
Share our story. Pour back into foundations that pour back into those they serve, such as the Jett Foundation and Parent Project Muscular Dystrophy. Treat every human equally and fight for others. Take time to look around you – How accessible is this area? What does handicapped parking really look like? Have higher expectations and empower those around you who may have various disabilities.
Thank you, Jessica!