Wednesday, 25 August 2010

Progeria Reunion - Newspaper article

With reference to the Progeria reunion Harry attended with Hayley & his new friends. I know Ive said it before but thank you again to those of you who helped & donated..xxx

Please see the link to the right of this post
Thank you

Friday, 20 August 2010

Great Ormond Street Hospital

19th August 2010 - Harry has just had an appointment with Dr Wilson, Genetics Dysmorphologhy Dept at Great Ormond Street Hospital. Learnt so much more about Harry's Progeria. Harry very bravely gave a skin biopsy & bloods to grow fibroblasts with a view to more research into his Progeria. She also took photographs of Harry to aid this - 'Watch this space for news on this'
Dr Wilson suggested a referral to an Occupational Therapist as Harry has limited movement in his fingers, hands & wrists and would benefit from using a keyboard during his time at high school as writing will become more difficult, which explains why he got level 4/5's in his SATS but a level 3 in his writing skills.
She also recommended Harry has another DEXA scan which measures bones density, Harry last had one of these in Dallas aged 7.
Feeling so much more positive after this appointment.

Friday, 13 August 2010

UK Progeria Reunion - Ashford Kent 2010

Harry had a wonderful time at the first UK Progeria reunion. He is now part of a very special family & has been welcomed with open arms. Harry has made many special friends from all across europe. Children see no language barriers, they see only friendship with a smile, a hug & a kiss.
Progeria children take your breath away with their warmth,zest for life & most importantly their love.

Thank you so, so much to all of you who donated to Hayleys Hope. This is the first of many reunions for Harry now & to see him playing with children like him has been inspiring to me as his very proud mummy. X x

Thursday, 5 August 2010

UK Progeria Reunion

So very, very excited. Harry & I are going to Kent tomorrow 6th-12th August to meet other children & their families whose lives are touched by Progeria. A very special Thankyou to the amazing Kerry & Mark Okines for making this possible. This Progeria reunion will be a wonderful chance for Harry to meet & share experi...ences with children similar to him. I know that Harry will make so many new friends & share so many special memories to treasure a 'lifetime'
Love you little man x x