Firefighters support Sherford family with 121-mile walk

A family living in Sherford, near Plymouth, affected by hereditary spastic paraplegia (HSP) has received crucial support from Green Watch at Crownhill Fire Station, who recently completed a 121-mile fundraising walk back to Crownhill from Bristol Children’s Hospital. The firefighters, dressed in their full firefighting gear, aimed to raise awareness and funds for this rare neurological disorder that impacts mobility.

Tyler Jones, born in 2013, initially experienced a typical pregnancy, but developmental milestones soon raised concerns. 

His mother, Katheryne Jones, recalls that although health visitors and doctors initially reassured the family that Tyler was simply delayed, persistent clumsiness and difficulties with jumping and balancing prompted further inquiries. 

After two years of testing, Tyler was diagnosed with Type 5a, one of the rarest forms of HSP, at the age of six. His younger sister, Eryn, was later diagnosed with the same condition.

ABOVE: Tyler and Eryn

HSP is a degenerative disorder that significantly affects mobility, presenting daily challenges for both children. 

Tyler currently uses a walking frame and wheelchair, while Eryn relies on a wheelchair or is carried when she becomes fatigued. 

The family is actively searching for a new home that can accommodate two wheelchair-accessible rooms and a wet room, as their current house cannot be adapted to meet their needs.

Despite these challenges, the family remains committed to keeping the children as active as possible, believing that staying active will help delay the need for full-time wheelchairs. However, they face additional hurdles, as the local secondary school promised to be built for the Sherford community has yet to break ground, leaving Tyler with no accessible options for his education.

The fundraising walk, which took place over four days, aimed to support both HSP & Me - Team Jones and the Fire Fighters Charity. 

ABOVE: Firefighters during their walk

With a goal of £3,000, the JustGiving page has already raised over £2,700. 

Katheryne shared her pride on the page, saying: “They only bloody smashed it, didn’t they? 126.17 and 128 miles respectively! Four days of sheer determination and guts; they are all held together by tape and knee braces now.”

You can support the family here: https://www.justgiving.com/crowdfunding/HSPandme-FireFightersCharity