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On June 10th 2019 my sister found out that her eldest child, Caleb (now 13) had been diagnosed with Friedreich’s Ataxia (FA). We had never heard of it before last year. It’s pretty rare; 1 in 50,000 people have it. It’s a genetic, degenerative, neuromuscular disease. In other words, all the muscles in your body become weaker and weaker over time. There is no cure. There is no treatment to stop or slow the deterioration of the disease. This past year has been extremely difficult and challenging for my sister and her family.  

Balance and coordination issues are usually the first signs; walking and stability become increasingly difficult, trips and falls more frequent, eventually requiring a wheelchair, and fine motor skills deteriorate. Unfortunately FA comes with many other challenges; cardiomyopathy (heart problems), scoliosis, respiratory difficulties, diabetes, speech and swallowing difficulties, vision and hearing problems, extreme fatigue, muscle pain. Thankfully cognitive ability, to think and understand, is not affected by FA.

To learn more about FA, visit https://friedreichsataxianews.com/what-is-friedreichs-atax…/.

I'm running the Virtual Great North Run (would have been my 5th time at the actual event) to raise funds for the UK charity that helps research into this condition. 

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