Limerick family shares Motor Neurone Disease story ahead of IMNDA's 'Walk While You'

AMANDA Lillis is sharing her partner Tony Ryan's story of his battle with Motor Neurone Disease and encouraging people across Ireland to walk 5km this month to raise vital funds for those living with MND.

Tony is from Nicker, Pallasgreen and was officially diagnosed with MND by Professor Orla Hardiman at Beaumont Hospital in April 2022.

Amanda says: “Tony, affectionately known as Schillaci –(there is a story behind that nickname) – is my other half and we have four children: Corey (27), Tonieka (24), Zekeisha (17), and Zantianna (11). 

She explains the signs started much earlier, in November 2020, with something as small as a muscle twitch in his arm. "We thought it was just work-related strain. But as time passed, that twitch turned into something much more serious.

"After months of tests and referrals, our world changed forever. MND is a relentless disease, and one of the hardest things about it is the uncertainty. There’s no way to know how long someone has, or which muscles will deteriorate next. 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."

Amanda describes MND as a "devastating neurological condition" that affects the nerves controlling muscles, leading to progressive weakness and loss of movement. It strips away the ability to walk, talk, and even breathe, all while the mind remains fully aware. There’s no cure, and every case progresses differently, leaving families like ours facing a future full of uncertainty.

She continues: "What’s particularly difficult, and what I want people to understand, is that because Tony looks fine, many don’t realize the battle he’s fighting. Just recently, we were shopping for clothes, and I was told I couldn’t accompany him into the fitting room.

"I had to explain to staff that Tony couldn’t dress himself, and the embarrassment and frustration of that moment really hit us. If his arms were in a cast, people would understand immediately. But with MND, the struggle isn’t visible, and that adds to the isolation."

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Amanda says they've been incredibly fortunate to have an amazing team of doctors and caregivers supporting them. "From Cappamore Health Centre to Beaumont Hospital, to Milford Hospice, and the IMNDA, they’ve been a lifeline for us. Tony was hesitant to join the IMNDA at first, probably because accepting their support felt like accepting the reality of the disease. But when we heard about the ‘Walk While You Can’ event, he agreed to register so we could raise money for them. This organization relies on fundraising for over 85% of their income, and the work they do is essential for families like ours."

Tony's partner explains that in the beginning, he felt a sense of embarrassment about needing so much help and support. "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, understanding that asking for help doesn’t make him any less of the man he is. His courage in the face of vulnerability is just another testament to his unbreakable spirit."

"This Sunday, we’ll be taking part in the 'Walk while you can' event in Pallasgreen, my daughter’s school Nicker National has also organised a non-uniform day to raise funds," says Amanda. "What started as just our family walking has grown into a community effort, and we’re expecting a big turnout. We can’t thank everyone enough for their donations, big or small, and for simply spreading the word. The support means more to us than words can express. After the walk, Powers Pub has kindly offered food for everyone involved, making this event truly about community spirit."

Amanda is asking everyone to get involved, whether through donations, by joining them for a walk or by sharing their own story. "MND is a brutal disease, but together, we can bring hope, raise awareness, and support those who need it most. You really never know what’s around the corner, life can turn in a heartbeat and when it does it can test everything you’re made of."

CEO of IMNDA, Kevin Burn, stresses the importance of this campaign during a time when demand for the organisation’s services is at an all-time high. “Motor Neurone Disease impacts not only those diagnosed but also their families and friends. Right now, we are supporting more people than ever before, and the need continues to grow. By taking part in Walk While You Can, you are helping to provide essential care and support to hundreds of families in need. Every contribution makes a tangible difference."

The IMNDA is calling on everyone across Ireland to take part in a 5K walk, whether individually or as part of a group, to support those living with MND and their families.

To register and find out more about the campaign, click here.