WARRINGTON North MP Charlotte Nichols and Mayor Mo Hussain are backing a campaign to set up a Motor Neurone Disease support group in memory of a local woman who died from the disease aged just 29.
The Mayor organised a meeting at the town hall with Marie and Andy Hilton and family friend Nathan, who are working to establish a legacy project for families affected by Motor Neurone Disease following the tragic death of their daughter Natalie in 2020.
Ms Nichols said: “It was great to hear about upcoming work in Fearnhead and a planned large fundraiser for next year working with Warrington Wolves and Leeds Rhinos. We were also both able to share some advice about raising awareness and grant funding, and have pledged our ongoing support as their plans develop.”
Natalie died from Fast Progressive Bulbar Palsy Motor Neurone Disease. A rare, aggressive form of MND. She was diagnosed in December 2018 and died on June 16th 2020.
For her family, the diagnosis was like a bomb going off in slow motion. But there was no time to collapse. There were bucket lists to plan, memories to be made, and a daughter to fight for. Aided by friends and supporters like Hook and Jab Amanda and Derek Groarke, who raised nearly £5,000 through a boxing fundraiser, Natalie packed more life into those final months than most do in decades. She skydived with her dad from 11,000 feet, holidayed abroad, and soaked up every moment with her loved ones.
But the disease moved fast.
By early 2019, Natalie’s speech was gone. By mid-year, her arms were weakening. By the autumn, she could no longer eat properly and required a feeding tube. Her mother gave up her business to become her full-time carer, and her father moved in to care through the nights. Every day was filled with medical routines, suction machines, fresh sheets, soft foods, and endless devotion. Her mother remembers it all—her efforts to help Natalie feel clean, safe, and dignified. Every moment was sacred.
Brave Natalie
By March 2020, Natalie could no longer walk. When her second niece was born, she couldn’t hold her—but the family made sure a photo could be taken, surrounding her with pillows so she could cradle the baby for one unforgettable picture. Even when she could no longer speak, she communicated with her eyes using an eye-gaze device—one of the last things she typed was a request to watch Snow White, her favourite film. Her mother sat beside her, holding her hand, knowing in her heart it would be the last time.
On June 16th, 2020, Natalie passed away. Her mother Marie, held her hand until the very end, whispering love and comfort as her daughter slipped away. “She looked at me and closed her eyes,” she recalls. “She never opened them again.”
If you would like to support the Hilton family’s efforts or help fund the MND Support Group in Natalie’s name, donations can be made via https://www.justgiving.com/crowdfunding/marie-hilton-4
A facebook group has also been set up CLICK HERE
