About Matt
Matthew John Holroyd
Matt was born on 17th January 1991 at Blacktown Hospital. He was a healthy baby and grew reaching the usual milestones all children should meet. Matt started school when he was five and straight away he made friends and became a very popular member of his class. Matt was a very talented and competitive boy who loved his sport. It wasn’t uncommon for us to be watching Matt at his school carnivals winning everything he went in with half the school cheering him on alongside us. So it was no surprise that Matt soon became a very talented soccer player and was captain of his team. He played at Doonside Hawks for seven years before being selected to play for one of the local representative sides at Blacktown, this was something he was very proud of and so were we. He played there for two years before deciding to return to his local club to play with his mates.
Things Matt loved to do
Matthew also loved riding his dirt bike. He would spend hours in our paddock with a shovel making tracks and jumps to ride, always with his dog following close behind. Matt also loved the outdoors, we would spend many weekends over many years on our friends property at Nyngan camping, hunting, catching yabbies and even learning to drive when he was about seven or eight years old. He absolutely loved spending his holidays there and would tell the best news in class about his camping trips. Everyone looked forward to hearing of his adventures out west. Matt also loved water-skiing, wakeboarding and especially racing his remote control cars.
Moving to Queensland
When Matthew was 16 we decided to move to the Sunshine Coast. After a short time of being there, Matt started his apprenticeship as a butcher. He loved his job and would sit with us most nights telling us all about his day and what he got up to. We looked forward to hear what he was learning and how much he was enjoying work and how he really liked the people he worked with.
About six months after he started working, Matt started to become unwell and would begin spending time in hospital. We eventually made the decision to return back to Sydney to be closer to family and friends. Matt was devastated and did not want to leave. He was able to transfer his apprenticeship, so we packed up, moved back to Sydney and settled once again in Londonderry. For the next couple of years Matt continued working and successfully completed his apprenticeship. That day was one of the proudest moments of our life, we didn't know if he would get there, given all the obstacles he faced. Matt loved music and he would always have his headphones on or have his stereo on so loud he couldn't hear us call. He decked out his car with the biggest subwoofer so that the passenger was nearly sitting on the dash board.
Matt loved hanging out with his mates and cruising around in his Ute that he loved and spent a lot of time making it look just right. They were good times and I loved hanging out and helping him.
Matt's Mito Journey
Matt's Mito journey started when he was about 12 years old. When Matt was playing representative soccer when we noticed some small things, the other boys seemed to be getting stronger and Matt was struggling with muscle problems and fatigue. By the age of 16 Matt started getting bouts of gastro causing severe dehydration with numerous hospital admissions.
After Matt finished high school and started working as an Apprentice Butcher, he suffered his first stroke episode at the age of 19 and we were told your son has suffered a stroke, it is probably a one-off thing and won’t happen again. Six months later he suffered another stoke episode, with his symptoms being mirror reversed. Matthew was having seizures, both grand mal and focal, vision loss and pseudo bowel obstructions. I guess this did trigger some suspicions and the doctors started running tests. Matt has blood tests, urine tests, a spinal tap and hair follicle tests. We got the positive diagnosis of MELAS from the hair follicles. My husband and I were relieved that we had an answer and Matt could finally get help.
I was devastated when I started to google what MELAS was, the first thing you see is NO cure, progressive and fatal… Those are not the words what you want to hear when you think we finally have an answer.
Matt's fight
Early on we would call an ambulance and head to Nepean Hospital. It became very clear that the doctors and specialists didn’t understand how to treat Matt. He would be admitted into ICU, have hourly observations and even tube feed when he could not eat. This caused major complications, John and I had many ‘talks’ with them to prepare ourselves for the worst. Eventually the doctors liaised with Professor Sue and her team and still they struggled to understand what Matt really needed because it went against everything they were doing. It was so frustrating that when the ICU doctors changed shifts, so did Matts treatment.
On one of our admissions they knew they could not manage Matt and they transferred us to the ICU at Royal North Shore where Dr. Christina Liang could consult and work with the doctors on a better way to manage Matt. It was so much easier for us now to contact Christina and the team, they were always ready and I didn’t have to go over and over Matt’s history every admission. It is comforting to know that you can say to a nurse or doctor, Matt is having a seizure and they believe you. For so many years we were told no, that’s not a seizure, because he could talk through them and respond to commands. It is very frustrating and you feel so helpless, watching your son in pain, not being able to see and tell us something is not right, and no one understands.
Matt never complained
Matthew has had at least 20 stroke like episodes. This caused many significant problems, from hearing loss, vision loss, cognitive impairment, bowel and bladder issues, he struggled to walk, balance and muscle weakness, seizures and fatigue. Matt spent all day in bed, sleeping sometimes up to 16 hours. He was socially isolated and the only interactions he had was with immediate family.
Not only Matt, but our family to become isolated due to Matt needing 24hr care. There is always one of us at home to be there for him. I took extended leave from work to care for Matt, as it was too hard to find carers that could manage and understand. Also, Matt didn’t like it and it caused too much stress for him.
As you can see from Matt’s pictures, he looked fine and the amount of comments from family and friends ‘he looks great, is he better now, I thought he was over that', everyone thinks that because he looks fine, nothing is wrong and once again we find ourselves getting angry and frustrated because, NO, he is not better and never will be…. This is why it is easier to isolate yourself because it is too hard and painful.
It is funny that the people you feel more comfortable with are your doctors because they are the only ones that understand and make you feel that you are not crazy.
Matt's Mito Mission
Hopefully you have gained a little insight into the amazing man we were lucky to have as our son. Matt has the biggest heart and has touched so many that we had no choice but to honour him and keep fighting like Matt did.
We hope that one day there will be a cure for this terrible disease but until then we need to keep raising funds and awareness to make that happen. The data from America shows that more children under the age of 10 dies from mitochondrial disease than cancer.
I thank you all for taking the time to read and gain a little understanding of Matt and Mitochondrial Disease.
Thank you
Lisa and John