A couple who tragically lost their young son to a rare genetic condition have raised more than £38,000 after completing the gruelling 100km London to Brighton Ultra Challenge.
Lynsey and Patrick Lewsey, accompanied by family and friends, took on the endurance event over the bank holiday weekend. They were among approximately 1,500 participants who tackled distances of up to 100km in scorching temperatures, travelling from Richmond through the Surrey Hills and Sussex countryside before finishing in Brighton.
For the Worthing-based couple, however, the challenge was about something far deeper. Their fundraising campaign, 'Raising for Raif', was established in tribute to their son and to support the children's hospice, Chestnut Tree House, which cared for their family. Setting out with an initial target of £32,000, their story resonated widely, helping them surpass £38,000, with contributions still coming in.
Raif's Brave Battle
Raif was born with a very rare genetic condition known as COL4A1, which affects the brain, eyes and other vital functions. From his first days, he experienced seizures and ongoing breathing and feeding difficulties, spending much of his short life in hospital, including multiple intensive care stays and periods on life support.
Chestnut Tree House became involved when he was eight months old, providing respite care, specialist support and eventually end-of-life care, allowing the family to spend precious time together. Despite the constant challenges, his parents describe Raif's life as one defined by bravery and resilience, before he died in their arms at just 13 months old.
The Ultra Challenge
The strength of Raif helped Lynsey and Patrick complete the London to Brighton Ultra Challenge, with physical demands intensified by the heatwave, pushing both to their limits as they navigated the 100km route.
"The challenge was indeed a challenge – especially in the heat," said Lynsey. "I struggled with blisters from about 25km, having not had any in training at all, and around the 81km mark could barely walk, but somehow managed to push past the pain, spurred on by keeping Raif's strength in mind as well as all the donations."
Patrick described a similar battle as the distance took its toll, but commented that thoughts of Raif helped him push on when it mattered most.
"The challenge was immensely difficult, especially in the heat, but I got to a point around the 75km mark where I remembered all the pain and suffering our little Raif went through, and all of a sudden I found the strength and mindset to keep going and push through until the end," he said.
Impact and Legacy
The London to Brighton Ultra Challenge is known for attracting participants of all abilities, from experienced endurance athletes to first-time challengers, many of whom take part to raise money for causes close to their hearts. For Lynsey and Patrick, crossing the finish line marked not just the completion of an extraordinary physical feat, but a deeply personal milestone.
Their efforts have ensured that Raif's legacy will live on, helping Chestnut Tree House continue its work supporting children with life-limiting conditions and the families who care for them. With donations still rising in the days following the event, their story stands as a powerful reflection of resilience, love and the strength that can come from the most difficult circumstances.
Collectively, those taking part in the London to Brighton Ultra Challenge have raised more than £750,000 for charity, with donations still increasing. For anyone interested in taking on their own Ultra Challenge to fundraise for a cause close to them, visit www.ultrachallenge.com.
