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
Saturday, 6 August 2011
A weekend of Fun
Harry & I flew to Gatwick on Friday 29th July & met with our dear friend Angela, who lost her beautiful daughter Claire to Progeria. We then hopped on a train to Bexhill on Sea where we were met by Hayley, Kerry & Mark. We then went for a beautiful lunch and a play on the beach. Friday evening Harry & I attended a Zumba Festival with Hayley, Mark & Charlotte to raise money for the UK Progeria Reunion. Harry certainley enjoyed the dancing.
Saturday 30th July. Harry & Hayley had some photos taken by the media with a view to running a story on their friendship. We watched the Bexhill carnival and Mark took Harry & Hayley to a fun fair, where more phots were taken. We shopped a bit and chilled a bit then in the evening we attended a Clairvoyant evening with Hayley, Kerry, Janie & Angela, again to raise money for the reunion.
Up at 6.15 am Sunday 31st July a sunny morning to head to the aerodrome where some very brave but equally crazy people did a skydive all to raise money for the reunion.
Monday 1st August we had a day of rest and relaxation, and Harry & Hayley playing in the Wii together, then to the train station to say goodbye. Flew from Gatwick to Manchester. What a lovely weekend Harry & I shared with very special people.
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