According to a story from The Garstang Courier, Joshua Brandwood of Lancaster, UK has begun organizing a 5K run as a fundraiser for the family of Lexi Tindale, a girl who was born with Krabbe disease. Lexi will be two years old in February. She is estimated to be one of only eight patients currently living in the country. As the illness is typically fatal, the money will go towards ensuring that Lexi can spend her remaining time with her family.
About Krabbe Disease
Krabbe disease, which is also called globoid cell leukodystrophy, is a very rare form of lysosomal storage disease that is often lethal. The disease often first appears before the first year of life. However, there are late-onset forms that manifest differently. The illness is linked to genetic mutations that impact the GALC gene. In the infantile form, symptoms include optic atrophy, developmental delays, microcephaly, spasticity, irritability, and low muscle tone; muscle weakness, developmental regression, vision, loss often appear later. In adults, symptoms include abnormal skin sensations, muscle atrophy/weakness, sensory neuropathy, and loss of dexterity. Krabbe disease progresses rapidly and there are no approved disease modifying therapies. Stem cell transplant may be useful early in the disease course. There is an urgent need for more effective treatments. In the infantile form, few patients survive more than two or three years. The late onset forms progress more slowly, allowing for longer survival. To learn more about Krabbe disease, click here.
A Helping Hand
Joshua reached out to the family about his plan and is hoping for the event to raise around £1,000. The race will take place at the Morecambe prom on August 29th at 1:00 pm. All participants are encouraged to join while taking into account social distancing measures. Joshua has also invited Isaac Lowe and Tyson Fury, two boxers who hail from Morecambe.
“Having two of the most established boxers in recent times back the event would undoubtedly help raise awareness and funds.” – Joshua
If you would like to help support Lexi and her family, click here.
Learn more about Lexi’s story here.