LoveforLouis is a Family Fund set up by Sam and Sarah Jackson for their son, Louis, who has Becker muscular dystrophy. Through LoveforLouis, friends and family fundraise for Louis’ needs and Muscular Dystrophy UK’s research.
LoveforLouis
Louis was diagnosed with Becker muscular dystrophy when he was just three years old. He’s completely his own person: unique, fiery, special and funny.
“He lives life for himself, the Louis way. If you meet him, you never forget him. He captures your heart and holds it.”
Louis is our middle child. Sam and I also have an older son, William, and our younger daughter, Lottie. We received Louis’ diagnosis while I was pregnant with Lottie, and the news completely turned our lives on their head.
“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, Sam and I have watched his daily struggles, but we’ve also seen incredible determination in him, and that gives us hope for the future. His consultants explained to us that how he feels when he wakes up every morning can be compared to how a non-runner would feel the day after running a marathon.
Louis is hard to define and impossible to compare to anyone else. Louis is just Louis. His strong sense of self will carry him through the moments when people are cruel about the way he walks, about being in a wheelchair, about 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, we are raising money to help fund research into Becker muscular dystrophy and to support Louis’ changing needs as he grows older and his condition progresses.
We’ve been incredibly grateful for the support we’ve received through fundraising challenges for Muscular Dystrophy UK. I raised £630 taking part in Europe’s fastest zipline in Snowdonia, Wales. Our family friend, Joanne Soulsby, raised £610 running the Great North Run, and two more friends completed a 15,000ft skydive as part of Make Today Count, raising more than £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.”
