43-year-old Nonly Reynolds is sharing her story as part of Leeds Hospitals Charity’s Global MND Awareness campaign.

43-year-old Nonly Reynolds, from Ilkley, is sharing her story as part of Leeds Hospitals Charity’s Global MND Awareness campaign, raising awareness and funds for The Rob Burrow Centre for Motor Neurone Disease.

Nonly was living the ‘picture perfect’ life with her husband Carl and daughter Nandi before her world shattered in May 2022 when she was diagnosed with MND.  

Read more: Donate to the Rob Burrow Centre for Motor Neurone Disease Appeal Today

Nonly had begun to experience symptoms for almost a year before her diagnosis and was forced to stop working, undergoing numerous tests before being told she has an incurable condition.

Nonly and Carl on their wedding day with family and friends

Since her diagnosis, Nonly’s condition has deteriorated rapidly. Nonly has lost her ability to talk, relying on voice banking technology to communicate, and also her mobility, and she is now confined to a wheelchair. Nonly says:

“I am living in the worst nightmare of my life with MND, one of the hardest parts is that I can’t even hug my little girl.”

Read more: 7 Stories of MND

Nonly and her family have recently relocated to a new home, as their second floor flat was no longer accessible. Nonly spoke to us about what it’s like living with MND and why the centre means so much to her family:

“My condition deteriorated quite rapidly after being diagnosed with MND, and last year my husband had to give up work to care for me and our young daughter. MND has taught me to appreciate the smallest things in life, and I’m forever grateful to have my husband and family with me.

“It can be really overwhelming visiting Seacroft and facing the harsh truth of what an MND diagnosis means, and being in a clinical environment with long corridors, no windows and no privacy makes it all much harder. For me, the centre is really important because it gives us a place to be with members of the community, to meet other MND warriors and share our different journeys.”

Nonly in her wheelchair with husband Carl and daughter Nandi standing next to her

We spoke to Nonly about the recent death of Rob Burrow CBE and how this has impacted her personally, she told us:

“It really hit home, Rob has done so much to raise awareness and funds. We have lost a legend and warrior of the MND community. I can’t imagine what Lindsey, the kids, and family and friends are going through, our thoughts are with them all.”

Read more: Our Tribute to Rob Burrow CBE