A few years ago as a family our life fell apart when my daughter Charlotte-Ann developed cancer and later was diagnosed with an incredibly rare genetic disorder called Cowden Syndrome. This disorder means she is at risk of growing tumours both benign and cancerous just about anywhere in her body, it is a terrifying and often debilitating condition with sufferers facing countless surgeries throughout their life time.
Starting on March the 8th 2018 (the second anniversary of her thyroid removal) I began a year of fundraising. My personal challenge is 260 CrossFit type workouts (anything that has appeared on the CrossFit games counts from running, swimming to lifting heavy stuff) across the year and hoping generous folk will sponsor me for doing so, I will also be selling T-shirts and hoping to arrange group fundraising wods with CrossFit friends.
Rare diseases are massively underfunded and misunderstood. The impact on those who have it or their families is no lessened because they are a smaller in number, in fact in many ways it;s worse. There are no celebrity figure heads, no local support groups, even trying to talk about it involves a lengthy explanation as to what it even is which increases isolation. Help me bring a little hope