by Jade Smith
about the author:
Jade Smith and her family just received her son’s diagnosis of Duchenne in April 2021. They have since created the nonprofit Quade Journey Duchenne Muscular Dystrophy to educate and support other DMD families in South Africa and around the world. You can find them on Facebook and Instagram.
The Start of a New Journey
This is a story out of South Africa – a short story but not half of the struggle.
The Diagnosis
A few short months ago we were diagnosed with a thing called Duchenne Muscular Dystrophy. We saw it on a series called New Amsterdam that sent us on the search for a pediatric neurologist. Prior to we noticed at age 2 that Quade was not walking correctly, was pressing upon his legs when standing, we went to 13 Dr in 5 years, suddenly I knew it was Duchenne Muscular Dystrophy but I wished that I never knew. At that moment, my whole existence stopped, my head started spinning, and I could feel my whole world closing in.
I didn’t know anything about the diagnosis except for what was said in the damn episode of New Amsterdam, I was clueless, hurt, and angry.
Telling the Family
We broke the news to Quade’s mother shortly after – and I remember telling her it feels like no matter where I go, or to who I talk, I am going to break a lot of people’s hearts. This was crushing to my soul, as we told the grandparents/close and extended family.
It was hell on earth with every word that left my mouth, but I could not break that day. I needed for everyone to see that we will fight this, we will fight for our boy. So, I kept rock-solid as much as I could. Only crying around corners and in bathrooms.
Friday night came and I was broken by music, every word of every song had another meaning, all I heard was a loss. I started sobbing when I was done, I decided that if this is the last thing I do, our boy will leave a legacy, a legacy of hope, a legacy of support, a legacy of education, a legacy of the raw truth.
Our Non-profit
This is how our Non-profit organization started, we put in countless days of educating ourselves, connecting with the DMD community, asking questions, creating content, Facebook pages, and the list goes on. Our mission within our organization is to create awareness and equality for Duchenne boys to assist newly diagnosed parents and boys by giving them real-life reference material as we embark on our journey with Duchenne.
We were suddenly determined to find answers across the globe, to educate everyone in our path, be activists for Duchenne Muscular dystrophy.
Reality Hit
But then reality hit, medical bills were suddenly piling up and we needed to focus on getting them paid. We then realized that the diagnosis was just the beginning of this journey, that life as we knew it would never be the same.
So we started the big fight with our medical, which is still ongoing. Our medical does not provide for rare genetic conditions here in South Africa like we hoped it would. Our support systems on information, trials, and all revolving around medical bills, assistance, and care for our boy needs to be paid out of pocket.
After that the grief hit us like a ton of bricks, I struggled to get out of bed in the morning and get to bed at night, pure anxiety flooded my body with the mere thought of losing our boy, I still get days and moments like this.
Isolation Started
While in my spin of anxiety I started reaching out to my family/friends…. You know those people that are always there at every party, wish you happy birthday, sends get well soon messages on your FB post…. Yeah well, there came another blow of life-changing awakening – They were gone !!!
Vanished, some denied the diagnosis saying they hope he gets better. Some said well, it could be worse, some kept quiet – and some even blocked us from social media. Here is where isolation started, suddenly no one invited us, sent messages, jokes, or good morning, or memes. Our phones became dead silent, we had no clue as to what we had done wrong.
We had home renovations starting, Quade’s wheelchair arrangements a full day of work, one after the other Dr appointments some good news some bad news, and we were lost.
But What About Our Marriage…
Our support group became so small that my husband and I only relied on each other but we became exhausted because each of us was carrying our own burdens, insecurity, we both were grieving, we both lost people and the reality hit us both, both of us were giving it our all but not making a lot of progress.
The questions started to rise “but what about our marriage” with our date nights consumed by Duchenne, we did not know how to navigate through this, we were already newly married with both sets of parents in law, we were co-parenting with 2 sets of parents, homeschooling our kids – and all that was still the easy part of life.
Reset and Refocus Every Day
I can’t say that there was a specific moment that all of the punches stopped hitting and we are still trying to navigate and cope and find our feet, all while the punches keep on rolling. I presume this will not stop, and our journey will keep on growing – constantly throwing punches day by day.
All I do know is superhero’s live in the hearts of our boys with Duchenne – that Quade’s 3 sisters love him in the same way they did yesterday. That we appreciate every moment like it will be our last. We cannot control the winds, but we can adjust our sails. We will reset and refocus every day if that means we will fight another day.
My brother had Duchenne as well as my two uncles (my moms brother). One of my cousins lived to 38. He went to school, playing in the band and college and got a degree. I also have young cousins with it now. Let him be a normal boy as much as possible. Most of all have God in your life and family if you don’t.