Matty Ellison: From Zero to Hero

Everyone knows Matty as the founder of the Huntington’s Disease Youth Organization, an advocate for youth around the world, and an inspiration to all. If anyone were to meet Matty for the first time, they would see a humorous, kind leader with a positive outlook on life…but very few would guess that behind his present, there lies a darker, more troubling past.

I first met Matty at HDYO’s very first North American youth camp a couple of years ago. I didn’t know who he was, but it was lunch time at the mess hall and I thought he looked lonely, so my friends and I slid our trays onto the table as I plopped down in the seat right across from him.

“Ello, ladies. How are you all doing?” he asked kindly, glancing up from his sandwich.

An immediate rush of excitement came over me at the sound of his British accent (mostly because I wanted one so badly), so after our introductions and a nice chat over lunch, I found myself overjoyed at discovering that he would be my group leader for the duration of our stay.

As we became more acquainted throughout different group sessions and activities, I decided that I was comfortable enough to start practicing my “very poor” (according to Matty) British accent. We had a lot of laughs about my imitation skills, British stereotypes, and constant inquires as to when “tea time” would be held.

But more importantly, Matty helped educate myself, as well as the rest of the campers, learn how to deal with subjects like coping mechanisms, caretaking, testing for Huntington’s, and building a family within the HD community…all while encouraging and building up even the weakest of us.

After having recently tested positive myself and in a very fragile state, I was absolutely shocked when Matty announced to our group that he had also tested positive for Huntington’s Disease. He seemed so positive about everything, like he always had the right answer. I couldn’t seem to wrap my mind around it, no matter how hard I tried.

From the time we all loaded ourselves onto the bus back home, to my second year of camp, to even up until recently, I had always wondered what Matty’s back story consisted of, and how he’d managed to touch so many lives at such a young age.

So, I finally asked him. I asked him everything: questions about his childhood, his grieving process, his favorite movie, and even questions that I knew were too personal, and guess what? He answered every single one of them.

Matty’s childhood was just about as normal as any other British child’s could get, (which I had to research based off of my initial confusion as to how one “goes on holiday”), but my lack of knowledge on British lingo is neither here nor there.

As a child, Matty had always wanted to be a police officer or a fireman, and was just about as carefree as a kid could be…but his naïvety towards the world became abruptly disrupted at the tender age of seven when his father was handed an unforeseen diagnosis of Huntington’s Disease. His whole family was completely blindsided by the illness, as they were unaware that his grandmother had died from it, but Matty’s mother and father continued to give him as much love and support as they could.

It wasn’t until around the age of ten that Matty actually began to notice the changes within his father, and as he grew into his teens, Matty found it difficult to fully understand what the disease meant, and while his desire to have a “normal” father increased with his ascension into puberty, his inability to accept that the terrors of HD would only grow worse also continued to increase.

Instead, Matty resorted to a mindset that allowed him to imagine that his father’s illness might just disappear altogether: a coping mechanism that he now looks at with regret.

“I could not understand why my dad was losing his abilities, and I found myself longing for a ‘normal’ dad. I was in denial about the whole thing, just hoping my dad would suddenly get better, I guess. This coping strategy was really flawed, and as a result I struggled hugely.”

Coming into adolescence is already a huge effort in itself, but without a strong male figure to turn to and an overworked mother who was forced to carry the family’s financial, emotional, and physical burdens on her shoulder, Matty began to hate being at home.

His situation at school was not any better. He starting getting bullied because of his dad’s symptoms, which only added to his already low self-esteem, creating a snowball effect that left him with no one to turn to and nowhere to run, but he tried to run anyways.

By the age of 14, the bullying at school became so unbearable that Matty stopped going altogether. His mother and teachers agreed to let him continue his studies at home, and the more time continued to pass, the more Matty began gaining back his confidence, eventually allowing him to accept his father’s struggle with HD. Perhaps “accept” is not the right word…I believe “understand” is more accurate, and being home with his dad and with this new sense of understanding, Matty gained insight on a subject that most people often take for granted: time. And so, Matty spent all the time, love, and youth he had left on his dad, creating memories that he might’ve missed out on if he had stayed in school.

” [There were] lots of happy and funny moments. Humor is a wonderful drug. We laughed a lot, as my dad would do many stupid things thanks to HD (and just because he was a fool, that was his character). It’s not really a happy thing, but I take a lot of strength from the way my dad handled HD. I didn’t see his sacrifices at first as I was too young, but looking back I see the brave decisions he made and I have nothing but respect for him and my mum in how they dealt with what life gave them.”

Still, Matty found himself fighting an uphill battle on a regular basis, fighting depression and losing his father. Rather than going off to college after his high school education, Matty decided to get a job in order to help support his family and caretake for his dad. During this time, Matty decided he wanted to get tested.

“I was 18 or 19 when I decided I wanted to be tested. I hadn’t thought about my risk that much at all growing up, despite knowing my risk since I was quite young, but now, at 18, I was suddenly thinking about testing a lot. I hadn’t really planned to get tested at 18, but that is what happened in the end.”

Luckily, his mother fully supported is decision, and for the first time, Matty dove head-first into learning everything he could about HD. This included talking with other families who dealt with the disease, conducting heavy research, and engaging in his genetic counseling sessions. Instead of turning the other way and running out of fear, even after learning the heavy facts, Matty embraced everything, feeling as if his eyes were finally opened for the first time. He was more sure now than ever about wanting to get tested.

The night before Matty was to receive his test results, his grandfather passed away. On top of that, he was to receive his results at the very same hospital where his grandfather had taken his last breath–just the night before.

“I took my mum with me for my results. I didn’t want to, but she insisted. It was such awful timing. I had a good relationship with my granddad, so we both went in to my test results with emotions all over the place already. I remember, at the time, hoping for a negative result, not for my own sake, but just to give my mum some relief.”

Sure enough, the next day, Matty tested positive for Huntington’s Disease.

“[Testing positive] was a very interesting experience. You go in to that moment knowing life is going to change to some extent. You don’t get many feelings like that during life. So surreal. When I was told I was positive, I had already mentally prepared myself for the worst news…so that helped I guess, but you really can’t be completely ready for that experience unless you’ve experienced it already.”

After the doctor let them leave, Matty remembers going on with his day like any other 18-year-old would: playing soccer, hanging out with friends, and living life as if nothing had happened.

“My emotions were on lock-down for a few months before I started being able to cry about my results, but it felt like good crying. It was needed. You have to allow yourself time to adjust and accept you results…it is such huge news, and you can’t expect to move on immediately. I found I needed about 6 months to accept my HD status, and then I started planning my future and looking positively [in order to value] the time I had, – to value the time we had.”

Unfortunately, just a few years later when Matty was 21, his father passed away-the very same night that Matty had arrived home from his first HD conference.

His dad’s passing forced Matty to take a step back and evaluate where he stood in life, as well as where he wanted to go. At the time, he held a dead-end job that wasn’t fulfilling any of his desires, and he had very little qualifications to pursue anything else, but he did know one thing for certain: He wanted to do something bigger than himself. He wanted to help the HD community, specifically the youth. Why the youth? Well, Matty had a good answer to that question.

“[My focus was on the youth] because I had started reflecting on my life and realized, for the first time, that HD had impacted me hugely growing up. I had never thought to [connect] my dad’s progression with HD and my odd route through education and general depression during those teen years. HD changed my life, and what was more important was that I started thinking ‘well, who was here to help me during that time?’ The answer, outside of my parents, was nobody, really.”

“Now I was interested to know if it was just me who had this experience, or if other young people around the world had similar issues with getting support. I had met a bunch of young people at the conference in Vancouver from about 12 different countries, so I listened to their experiences and asked about HD support options for young people in their countries. Nobody apart from Scotland had a decent youth service set up. What I also recognized as I started to develop this idea of helping young people was that I had experienced a lack of educational material as a young person [who needed] to learn about HD appropriately. It was practically impossible to find online or off.”

And so, Matty embarked on his journey to start the nonprofit “Huntington’s Disease Youth Organization,” which did not come easy. He and some other young supporters of the ideas were broke, so Matty ran 11 marathons in order to raise enough money to launch the HDYO website, quitting his job to maintain full focus on his organization.


Only five years after it’s first launch, the HDYO website began generating over half a million website visits a year, providing content in ten different languages. HDYO only has a small staff team, with many volunteers helping, but that has not stopped them from making a tremendous impact. They’ve held five youth camps on three different continents (fully funded for the youth, might I add), for over 275 young people. Last year was their busiest year yet, as HDYO successfully held three youth camps in three different regions of the world. What’s in store for 2017? I’ll go ahead and let Matty make the announcement:

“In the space of 6 months, we ran, planned, and developed three youth camps on three continents, including Australia and New Zealand, all for the first time. This was all done with only 2 staff and some fantastic volunteers.”

So far, campers, volunteers, and thousands of young people (including their families) have continuously received support and education at HDYO, and the organization continues to do amazing things for youth affected by HD.

On any other ordinary day, you can find Matty engulfed in a range of other activities. I pictured that the British native could be found drinking tea, eating biscuits, and reading a hefty Charles Dickens novel while pushing think-lensed glasses back onto the bridge of his nose, but my answers were far from true. Matty revealed that he’s instead finishing some classes that never got to complete as a teen, studying Polish, preparing for his very first child (congrats, Matty!), watching his favorite movie (Good Will Hunting), and “pretending to know what [he’s] doing with DIY around the house.”

He also loves traveling, which HD allows him to do often. I asked Matty what some of his most humorous memories were from HDYO camps, to which he replied,”Definitely a certain American camper turning up without their luggage. Having never flown before, they forgot to pick up their luggage, and turned up at camp without anything. Your English accent mocking was quite amusing too!” (I wasn’t mocking; I was trying my best, and I resent that, Matty!)

His biggest reward has been helping youth impacted by HD, and although HDYO’s campaign may seem like it’s all about fun and togetherness, there is a different vibe behind the scenes. HD is a very serious issue, so I’m sure plenty of you can relate when Matty says:

“I take the global effort of HDYO’s goals very seriously. I’m not happy sitting back on what we have accomplished. I’m always thinking about what we are going to do next and where in the world we’ve yet to break through.”

But even hero’s have their fears and doubts. We’re only human, after all.

“I do feel afraid sometimes, I worry about HD of course, who wouldn’t. Not sure you’d be normal if you didn’t worry. You have to be strong. I think it gets harder to cope with knowing you are HD positive as time goes by, because time is all that separates us from HD. So I find I need to be stronger now mentally than I was when I first got my results (almost 10 years ago now… !). I find strength from life, from those I love, from my work which is fortunately for me also my passion. I find strength from my dad, he is my hero for how he dealt with HD. I hope I manage with half the dignity he did. But for now I stay strong and I smile and I enjoy my time. Whether that’s working, playing, chilling, travelling it doesn’t matter. I try to do it with a smile on my face and recognize that we all have limited time on this earth anyway.”

Well said, Matty. Well said.

I hope that everyone (including myself) is able to look at where Matty started, where he is now, and draw inspiration from his journey.

Suffering is good; it makes you stronger, just like it did for Matty. And we don’t have to help thousands of people in order to make an impact. If we are able to touch just one life, then perhaps they will be able to touch a million.

Many thanks to Matty and HDYO for all that they do for the youth.

You can read Matty’s full interview, which contains much, much more, HERE.

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