Hi, Im Harry Crowther, Im 24 years old and I have an extremely rare genetic disorder known as Atypical Progeria Syndrome (Non Classical Progeria) whereby I have a defect with the LAMIN A/C gene (LMNA). Though not to be confused with the classical Hutchinson Guilford Progeria Syndrome (HGPS) - both are Premature Aging Disorders. I was diagnosed in the USA aged 7 years old. Together with my Mum I keep this blog. Hope you enjoy my story.
Harry
Sunday, 15 April 2012
They did it!!
Congratulations and lots of love to Charlotte & Becky from Harry & Hayley as the girls crossed the finishing line after running 272 miles from Harry's home in Mirfield on the 5th April 2012, Yorkshire to Cranbrook, Kent 14th April 2012 the home of Hayley's sister Charlotte.
Over £5,000.00 has been raised for the Progeria Family Circle UK
Harry's dad John joined the girls for the final 6 miles too. So proud of him for running 36 miles in total. Love you John/Daddy xx
Saturday, 7 April 2012
Harry & The Olympic Torch
Meet the outstanding 66 year old Pat who is the oldest known Olympic torch bearer in Kirklees, having her photo taken with Harry who at 13 is the youngest in Kirklees. Pat is such an inspirational lady, who runs marathons for charity. We would like to wish her all the best for when she runs the London Marathon on the 22nd April 2012.
Friday, 6 April 2012
Ten in Ten
Thursday, 5 April 2012
Progeria Family Circle UK Marathon Day 1
Harry's Dad, John. Hayley's sister Charlotte and friends Becky & Tim set off from our house today on the first of 10 marathons in 10 days. I am so proud of my husband who ran an outstanding 29 miles today. The most he has run is 13!! A great big thank you to Charlotte, Becky & Tim for motivating John and keeping him going. Harry is so proud of his dad as I am proud of all of them for running their legs off in support of Harry and Hayley and children with Progeria
Subscribe to:
Posts (Atom)