Amanda Lillis

Tony’s Story ❤️

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.

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.

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.