As a 8 year old in May 2013,
I attended my very first 22q day @ the Zoo with my Dad, to find out more about what my 2 week old baby Brother Matthew was just diagnosed with.
Giving him extra fingers, 3 holes in his heart, one missing kidney, facial imbalance, sleep apnoea , low immunity, no parathyroid function, low Vitamin D, creating low calcium, creating cramps and convulsions were the conditions that he had presented with so far by 10 days old from his 22q diagnosis.
We were welcomed by founder of 22q Ireland https://www.22q11ireland.org/ Anne Lawlor at the gates of Dublin Zoo.
Immediately my Dad got busy chatting with Anne and the other parents desperately trying to find reasons for hope, listening to their stories of success in a 22q way of life.
It was a wonderful sunny day and everyone was really considerate and kind in our new supportive community of 22q Ireland.
11 years on. in May 2024 we are so grateful for all Matthew has taught us about our fragile human condition and the randomness of good health for us all.
I have learnt to believe in long shots and hope from the bottom of my heart that everything will work out in the end, whether in academia or athletics I believe deeply in the ability of our human condition to overcome obstacles and adapt.
When I was a 10 year old, I attended a series of sign language courses with my mom Kathy as this was the only way we could communicate with Matthew. At birth the medical experts said Matthew will never walk or talk due to his intellectual and physical disabilities because of his deletion of DNA 🧬 on his 22nd chromosome. The genetic material to create the faculties were simply deleted before he was born.
But
Thankfully my parents mantra after our first visit to the 22q in the Zoo in 2013 was we need to support Matthew to be the best he can be, as 22q was his only ticket into the human race to live his life, in his normality. We all wanted to learn how to give Matthew his best chance at learning how to walk & Talk
So we loved him played with him and wrestled with him until he learnt to move crawl and laugh. Our wonderful speech & language therapist Sinead taught Matthew over years how to make sounds through the medium of play therapy on our sitting room rug with weekly home visits for years.
By the time he was 5 years old he could hum a tune, we were delighted to hear his voice for the first time and see his satisfied smile as he was learning to express himself and become part of the banter as 1 of 4 brothers in a busy home.
All this time I was a sports fanatic and I too was learning how to express myself through well being Activities & improve my own skillset through opening up my neurological pathways by teaching my nervous system actual memory through movement of my muscles in a similar way Matthews therapists got Matthew to walk and talk through play therapy.
As Matthews 18 year old oldest brother
I was delighted to attend my last 22q at the zoo as an elite student Athlete with over 20, Division one American University college football programmes interested in offering me a scholarship as a student Athlete
and my inspirational brother Matthew smiling proudly back at me wearing his favourite NFL top as my number 1 fan and motivator. Matthew knows me better than anyone else and he has taught me so much about resilience determination and enjoying the journey of becoming the best version of yourself.
I am so grateful for the supportive love of my family and especially Matthew as he has inspired us all to be the best version of ourselves with a sky is the limit attitude
of “why not” .
I always wear my 22q awareness wrist band to remind me of the hope filled fun times and block out the times of panic, despair and fear by remembering a smile or word of encouragement from Matthew, the old Hebrew meaning for Matthew is
” Gift from God”
Watching Matthew develop despite his real 22q disabilities has been a really tangible gift from God for myself to always strive to realise my amazing potential as a human being and help others to learn to help themselves wherever I can.
I’m the American colleges football world,
Currently I am ranked as the 31st best American college football kicker/Punter in the world 🌎 by Kohl’s kicking. Since I became the first European ever to win the Eastern United States
regional Kohl’s kicking competition in Philadelphia in 2024 my next challenge is to win a spot on the All- American team in California in July ’24 and secure a university scholarship where I hope to study subjects so I can continue to help society to adapt to include people who have needs like my beautiful brother Matthew.
I hope to continue to develop & draw inspiration from my family and especially Matthew so I can keep learning how to improve as a human being as I start my journey as
a student Athlete in America. My main off pitch passions are social inclusion through participation in well-being activities as I see how much play therapy has helped developed Matthew socially. Our next big dream for Matthew is independent autonomous living. We hope & pray for this to come through 🙏.