Amanda Lillis shares her husband Tony's story of Motor Neurone Disease (MND)
This is Tony’s story. Known affectionately by most as Schillaci. He was born and raised in Nicker, Pallasgreen, County Limerick, the second youngest of 12 siblings. His parents, Mike and Eileen (Ninny) Ryan, built a home filled with faith, love and hard work, values that shaped him into the man he is today. Tony's Mother sadly passed away this January at the age of 84, but her strength continues to inspire him and live in him every single day.
He started working young and mainly in the construction industry. We met in the 90’s and we built a life and had four incredible children: Corey (28), Tonieka (25), Zekeisha (17), and Zantianna (12). Life was good, busy, full of laughter, and focused on providing for our family. But in November 2020, everything changed.
"Tony’s MND started in his arms, slowly wasting the muscle. Now, even simple tasks like dressing, washing or feeding himself have become a challenge. I’ve taken on the role of caregiver, something I never thought would have happened at 49 years of age."
It started with something small, a twitch in his upper left arm. He brushed it off, blaming work strain and thinking it would go away. But it didn’t. The twitch turned into persistent pins and needles, then a dead-arm sensation. When one of his arms started looking smaller, we knew something wasn’t right. After weeks of my nagging and eventually dragging him to the doctor, the first referral from the Doctor to the neurologist was August 2021 and then the journey of tests, referrals, and waiting began.
In April 2023, Tony received his official diagnosis: Motor Neurone Disease from Professor Orla Hardiman in Beaumont Hospital.
MND is a cruel and relentless illness. It attacks the nerves that control your muscles, slowly taking away movement, speech, swallowing, and eventually breathing. The worst part? Your mind stays sharp the entire time. There’s no cure, no set timeline, no way to predict which muscles will fail next. It’s living with uncertainty, knowing that every day could be the last day you do something on your own.
"We’ve travelled, laughed, and lived with urgency because we don’t know what tomorrow will bring. But we also face daily struggles that many don’t understand."
The muscles slowly waste away, making even the simplest tasks impossible. Tony can no longer dress or feed himself without help which I have stepped into this role. It’s not easy, for either of us. In the beginning, Tony struggled with embarrassment, the idea of needing help, of losing his independence, of not being the man he once was. But what Tony has learned is that strength isn’t just about doing everything yourself. It’s about facing the battle head-on, finding new ways to adapt, and accepting the love and support around you.
Since Tonys diagnosis, we’ve made it our mission to create as many memories as possible. We’ve traveled, laughed, and lived with urgency because we don’t know what tomorrow will bring. But we also face daily struggles that many don’t understand.
"For a man who’s always been so independent and capable, accepting this illness was incredibly difficult. But over time, he’s shown even more strength by allowing himself to rely on others when he needs to."
Because Tonys disability isn’t always visible, we often run into challenges that shouldn’t exist. A recent trip to buy clothes turned into a humiliating experience when we were told he couldn’t bring someone into the fitting room to help him. We had to explain that he couldn’t dress himself and even then, it took time for them to allow it. If he had a cast on his arm, nobody would question it. But MND is invisible to those who don’t know – and that’s why awareness is so important.
We are beyond grateful for the incredible team supporting us – from his Doctor from Abbey River House, Dr Maurice Rowsome, Palliative Day Care in Milford Hospice, Cappamore Health Centre to Beaumont Hospital and the IMND Association. The IMNDA relies on fundraising for over 85% of its income, providing crucial support for families like ours. At first, he wasn’t ready to sign up, maybe because doing so felt like admitting to himself what was happening but they have been incredible in helping and funding services and equipment that is vitally needed for Tony to have somewhat a feeling of independence.
Amanda Lillis
