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Can you hear the music?

Can you hear the music?

29/02/2020
Posted by:

C.Degenhardt


A Very Different Child

My cousin Lyon Browning was born on March 11, 1992. As in most families, the arrival of a baby was a cause for celebration. But Lyon was born with a complication. I was only six years old at the time, so my memory of the event is unclear, but I could tell from the way the adults were speaking that it was serious. I remember being told that Lyon was born without a part of his brain.

In medical terms, that’s not quite correct. Lyon has Wolf-Hirschorn syndrome, which means that he was born with a deleted chromosome. This is an extremely rare condition—which is why you’re reading about it Lyon on International Rare Disease Day. But as a young boy, I didn’t know that. All I knew was that my cousin Lyon was different.

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Lyon looking handsome!

As Lyon grew older, those differences became more apparent. He never learned to talk, or at least he didn’t speak the way that most of us do. What I mean is that his immediate family can understand the sounds he makes, but most people can’t. He’d eat messily. He needed help to do everything. He couldn’t walk until he was eight, and even then he only walked slowly. If we wanted to run, as children often do, Lyon could never run along with us. I can remember often being frustrated with his pace. I’ve never been known for patience, but if I wanted Lyon to see something or do something, I had to take his hand and walk with him, waiting for his slow, measured steps. Walking up and down stairs with Lyon seemed to take forever to me, a child who was always in a hurry to do everything. Most of the time, I’d get frustrated and I’d either pick him up and carry him or I’d simply run ahead and wait for him. I loved him, but I wanted to play right now.

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One thing that was apparent at a relatively early age was that Lyon loved music. When our grandmother would buy Lyon a musical toy or DVD, he would spend hours playing with it. It would be the only thing he wanted to do. Music seemed to reach him better than words.

When Lyon was about eight years old, I started playing a game with him. The game was that I would pretend he was a Titan, and merely touching him would send me flying, sprawling across the room. Then I would look at him in shock, and ask him why he did that to me. He would laugh every single time. We played that game over and over again, and I became one of Lyon’s favourites. Because of my love of wrestling with my younger brother (and Lyon’s own younger brother Elijah), Lyon developed a symbol for me. The symbol involved grabbing his neck wrestler style, and when I came into a room he’d immediately make my symbol and yell my name as best he could.

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Us with our wonderful grandma! No longer kids, still loving friends.

 

A Boy Who Never Forgets

Time passed. I played that same game with other children, and though their reactions were similar to Lyon’s, most of them seemed to forget about the fun we once had. But Lyon, the child who was limited, never forgot about the joy I brought into his life.

I moved to Lethbridge with my family when I was fourteen. Lyon and I would only see each other a few times a year, and yet his reaction would always be the same. Lyon would grab his neck and shout, overjoyed to see me. Lyon is never inconsistent in love, he loves you exactly as much as he did the last time you saw him.

Image of Merogenomics article quote on love and consistency from a child with rare disease

Even today, if his mother tells him I’m coming for dinner, he’ll wait by the window until I arrive, and when I do, he’ll always come to the door and hug me. He’ll take my hand, and then often he’ll ask me to hug or kiss others—even sometimes people whom it would be awkward for me to kiss! Lyon is a boy who loves everyone, and wants everyone to feel loved.

I experienced depression as a young man, and even had moments where I was close to suicide. As a person who has been as low as anyone is likely to be, I can tell you that if you think you cannot smile anymore, Lyon will remind you that you can.

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So Much More Than Meets the Eye

As I got older, my perception of Lyon changed. I always loved Lyon, but for most of my life I saw him the way most of us see people with limitations—I only saw the limitations. I saw a boy who I loved, but who would never get to grow up. I saw a boy who would never speak, never write, never marry, and never run or jump or do any of the wonderful things that so many of us take for granted.

But as I watched Lyon grow, I began to realize that he isn’t just limited, he’s also extraordinarily gifted. This may sound like a strange thing to say about someone whose limitations are so obvious, so clear that they’re the first thing you notice, but Lyon has the ability to bring people together through music.

As I mentioned earlier, Lyon is a lover of music of any kind. He doesn’t seem to discriminate based on style or even talent. He’ll smile and dance, and it doesn’t matter if it’s Justin Bieber, the Rolling Stones, his brother’s band Fever Feel, or even my Aunt Rita’s off pitch singing. If it’s music, Lyon is happy.

Image of Merogenomics article quote on how special a child with rare disease can be

Something incredible will happen when Lyon begins singing and dancing—other people will join in. Even people like me, who are terribly self-conscious about their singing and dancing, will begin, even if only for a moment. And before you know it, an entire room could be filled with music and laughter, just because of one small boy who will never grow up. In fact, even the most gregarious of my friends don’t have anything approaching Lyon’s ability to fill a room with music, with dancing, with laughter. At his sister’s wedding, Lyon was one of the first on the dance floor, convincing big, tough, manly men to dance like no one was watching.

Lyon is not a musician, but his life is music to the hearts of the people he touches.

All of us have a purpose. Sometimes our purpose is hard to find. But Lyon’s is simple: to spread joy. He has done so better than anyone would ever have dared imagine. Can you hear the music played by this incredible boy’s life?

 

This article has been produced by Chase Degenhardt and edited by Jason Chouinard, BSc. Reproduction and reuse of any portion of this content requires Merogenomics Inc. permission and source acknowledgment. It is your responsibility to obtain additional permissions from the third party owners that might be cited by Merogenomics Inc. Merogenomics Inc. disclaims any responsibility for any use you make of content owned by third parties without their permission.

 

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