LoveforLouis is a Family Fund set up by Sam and Sarah Jackson for their son, Louis, who has Becker muscular dystrophy. Louis is completely his own person. His mum describes him as ‘unique, fiery, special and funny’.
Sarah went on to say: "He lives life for himself, the Louis way. If you meet him, you never forget him. He captures your heart and holds it.”
Louis was diagnosed with Becker muscular dystrophy when he was just three years old. Through LoveforLouis, friends and family will be fundraising for Louis’ needs and for Muscular Dystrophy UK.
Louis is Sam and Sarah’s middle child. They have an older son, William, and their younger daughter Lottie. They received Louis’ diagnosis when Sarah was pregnant with Lottie. The news ‘turned life on its head’ for the Jacksons.
“Lottie knows no different. She will grow up with a brother who needs extra help. William, perhaps, knows too much. No matter how we try to hide it, William sees our emotions during setbacks and our worries for the future.”
Since Louis’ diagnosis, Sarah and Sam have watched his daily struggles. Sarah describes his determination as a key factor in their hopes for the future.
Louis’ consultants told us that his starting point, how he feels when he wakes up each morning, can be likened to how a non-runner would feel the day after running a marathon.
Louis is hard to define, hard to explain, like no other. Louis is just Louis! His strong sense-of-self will carry him through when people are cruel about how he walks, about being in a wheelchair, coming last in a race or falling over… again.
"We are hopeful, with everything we have and the progress in research, a cure will be found to stop this condition.”
As a family, the Jacksons are raising money to help fund research into Becker muscular dystrophy and Louis’ changing needs as he grows older and his condition progresses.
The family have been busy fundraising for Muscular Dystrophy UK through a number of sponsorship challenges. Sarah has raised £630 taking part in Europe’s fastest zipline in Snowdonia, Wales. Joanne Soulsby, a family friend, raised £610 taking part in the Great North Run, while two more friends of the Family Fund completed a 15,000ft Sky Dive as part of Muscular Dystrophy UK’s Make Today Count event, raising over £1,200 for LoveforLouis.
"We’re going to do as much as we can to raise money and awareness to fight this devastating condition and hopefully help find a cure.”
Net proceeds from fundraising will be split 80/20% between MDUK's research into Becker muscular dystrophy and help support the family with Louis' future welfare needs