Thursday, 2 October 2014

"It's not goodbye, it's see you again soon"

Harry giving Claudia a kiss and a cuddle the night before she flew home to Portugal.
These cuddles and kisses are so important to the children. It's not goodbye it's see you again soon...

Wednesday, 1 October 2014

International Progeria Reunion - Istanbul, Turkey September 2014

Harry has been lucky enough to attend another reunion this year as guests of Gamze and the President of Turkey.

I was unable to travel with Harry due to commitments in University, so on Sunday 21st September Harry travelled to Turkey with his Grandad. However on the evening of Wednesday 24th I surprised them both by arriving and spending the rest of the week with them.

We had a great time and thank you to all involved.

Friday, 15 August 2014

Progeria Reunion - Denmark 2014

On Thursday 5th August, Harry & I along with his big brother, Jack travelled to Denmark, to take part in this years Progeria Reunion. The reunion has always been the wish of Jesper from Denmark and this was finally made possible. An amazing time was had by all.

Tuesday, 13 May 2014

Thank you

Huge congratulations and thank you to Harry's brother Jack, his aunty Julia, cousin Lloyd and friends Nick and Michael who completed the Rat Race and raised a fantastic £1025.88 for our charity Progeria UK
You guys ROCK!

Thursday, 8 May 2014

Progeria Reunion - Fundraiser

On the 10th May 2014 Julia, Lloyd and Jack will be taking on the challenge of the World’s Largest Assault Course - 20 miles and 200 obstacles to raise much need funds for Progeria UK to enable families affected to attend the essential event ‘Progeria Reunion 2014’ in Denmark. This event will last a few days in which the parents can share their experiences, find out about medical developments and comfort each other, and the children can have fun playing together. Past reunions have taken place Germany, Belgium, Italy and the Netherlands and England and this year a family from Denmark will be hosting the Reunion for the first time. The flights for the UK families are going to cost in the region of £5000 and will be funded by Progeria UK

Progeria is a fatal, genetically determined disease of childhood characterised by dramatic, premature aging that occurs at about seven to ten times the normal rate of aging. Because of this accelerated aging, a child of ten years will have similar respiratory, cardiovascular, and arthritic conditions that an 80-year-old would have. Progeria is the most radical of the ageing illnesses. There are currently around 80 known cases of Progeria in the world, 24 of which are in Europe, and just 5 in the UK. As the worldwide Progeria community is so small it is essential to the families that they stay in regular contact, and for the children that they see others who share their condition.

This charity is very important and close to our family and friends, Harry Crowther, Julia's Nephew, Lloyds Cousin and Jack's Brother has Atypical Progeria… find out more about Harry, his friends and life on his Facebook group ‘Atypical Progeria Syndrome - (Non Classical Progeria)’

What are we doing that deserves your support?The Rat Race Dirty Weekend is 20 miles of off-road running with 20 zones of obstacles, totaling some 200 obstacles across the full course. It’s a big’un. There’s no shirking the distance over 20 miles. Add 200 obstacles and it’s an absolute brute. The obstacles are distributed across 20 zones so that the course is permanently punctuated with up, over, under, through, crawl, climb, get wet, jump, land, get muddy, bam. It’s relentless!

Donating is so easy. You can text DIRT52 (and the amount you'd like to donate £1, £5, £10 etc) to 70070

Thank you & much love xxx

Friday, 25 April 2014

Hayley, Harry & Ashanti

We all travelled to London for a photo shoot for The Sun Newspaper, who did a feature on the Harry, Hayley & Ashanti. Please see the link to read their stories and check out their videos.

My boy & Me

A huge thank you to Stewart Williams (Photographer) for the fantastic photos.

Sunday, 16 March 2014

Thank you Matthew

On behalf of Harry and our Progeria family we would like to say a BIG thank you to Harry's friend Matthew Greaves. Harry first met Matthew when he passed him the Olympic Flame in June 2012. Matthew said "Harry is a young man who's cheery disposition, willingness to help others and ability to overcome are truly inspirational".

On the 15th March Matthew completed The Chase Walk and donated all his sponsors to Progeria UK.

Thank You Matthew xx

Thursday, 16 January 2014

Remembering Sam Berns

Sam Berns who gained his angel wings on Friday 10th January 2014 was asked:- Is there any advice you would give to another child facing major life challenges?

His inspirational reply was:-

"I guess the main thing is…you want to overcome the challenge,….so you should probably try to do everything you can to overcome the challenge. But, always remember that being happy is the most important thing. So do everything that you can to make your life a happy one".