Morven has just turned three. He lives in West Cornwall with his Mum Molly, Dad Nick and their dog Beanie, and he loves swimming in the sea and getting outdoors. At just five days old, Morven was diagnosed with STXBP1, a very rare neurological condition that affects every part of his development, including movement, muscle control and communication. His family were told he may never walk. “Despite the complex challenges Morv faces every day, he is determined and brave,” said Molly. “He is an absolute beacon of light and joy in the world.”
Morv and Molly dedicate countless hours to physiotherapy every day, and at a private physiotherapy intensive the family tried the Trexo, a robotic walking aid designed for children with neurological and physical disabilities. “It felt like hope and possibility,” said Molly. With the Trexo costing a significant sum to buy and ship from Canada, the family launched a fundraising campaign.
Not only did Stand For contribute towards Morv’s Crowdfunder, they went a step further. “We told Neil we had a golf day planned, and he said, tell you what, I will match whatever you make on the day,” said Molly. “It was a brilliant incentive. Suddenly someone’s hundred pounds meant two hundred pounds. It was a beautiful day, and people were so kind.”
Within a couple of months, a campaign the family expected to take far longer had all but reached its target. Morv’s Trexo is now within reach. “We were told Morv may never walk, and for the first time we watched him move through the world upright, initiating the stepping movement himself, exploring, smiling and experiencing freedom in a way we had never seen before,” said Molly. “It will open up his world. It is literally a life-changing bit of kit for Morv.”
Molly is clear that STAND FOR’s help arrived alongside an extraordinary wave of generosity. “We have been met by overwhelming support from everybody around us in our little community and from much further afield. People from Australia, the Bahamas and America have all donated. It has been a very humbling experience.”
“It was really nice to speak to Neil directly,” said Molly. “He was so understanding and empathetic, and just very supportive of what we were doing. What he did was so generous and so kind. We kept everything so quiet for so long, and now everybody is behind us. It restores your faith in humanity.”
Story published with permission. Content and quotes drawn verbatim from the Stand For case study.
