Harry

Harry

Thursday, 31 August 2017

Progeria Family Circle Reunion in Oslo, Norway 2017

From the 24th - 29th of August Harry & myself attended this years Progeria Reunion in Oslo, hosted by Miss Skoom. We had an amazing 5 days of fun and laughter and there are so many people to thank, from Miss Skoom, Marjet, all the dream team. Huge thank you also to the trampoline park, circus Arnardo, the amusement park, go karting, zip lining and Frambu. Many thanks also to Hotel 33. There was of course also time for reflection and remembering those who we lost in 2016/2017 since our last reunion. Micael, Gamze & Mia, who we all remember with love and affection.

from L>R Harry, Michiel, Mats from Belgium and Miles from Sweden.

Harry with Amber, sister of Michiel.

Harry with Claudia from Portugal

Amber, Harry & Bjorn from the Netherlands

Harry with Luke and his dad Ronny from Germany, who for them, this was their first reunion.

Harry with Michiel and Jesper from Denmark. Jesper and the community of Denmark helped fund this years reunion and for that we offer you much love & appreciation.

Wednesday, 28 June 2017

Goodnight sweet Gamze

On the 27th June 2017 aged just 17 years and 4 months our dear friend Gamze fell asleep and grew her angels wings. Gamze had the most beautiful blue eyes and a smile so bright it would light up a room. It has been our pleasure to be your friend sweet Gamze. Sleep well xxx

Monday, 26 June 2017

Family is everything. Progeria Reunion Promo video

https://www.facebook.com/permalink.php?story_fbid=492606944404993&id=100009670753044

Please support if you can. Let's make this years reunion hosted by Miss Skoom in Oslo, Norway in August a reality.
Thank you xxx

Meet just some of the children who benefit from the reunions and magical, precious time spent together.

Monday, 20 February 2017

News, news & more news!

Been a busy few months. Harry is now working as an Apprentice for SimplyBiz. The added bonus is that the office is in the same building as his favourite football team. Huddersfield Town. Harry has also passed his driving test in January
Huge thank you to Harry's driver instructor Stuart Wilkinson for supporting Harry in passing his test.

Harry turned 18 on the 2nd Feb and to celebrate we had a family meal and also invited our friends over from Belgium. Michiel and his sister Amber have HGPS along with Mats. So it was great for the four of them to spend a weekend together.

Friday, 26 August 2016

Goodbye Sixth Form... Hello Apprenticeship.

Today I had a meeting with Estio Training in Halifax as the first part of my next challenge of a career in the IT industry as an apprentice If succesful I will receive quality training combined with a real job role within a top local organisation. Ive applied for a company local to me, here in Mirfield so Im keeping my fingers crossed they will offer me an interview and more importantly a position with them as a Digital Marketing Apprentice. Watch this space... Harry :)


Sunday, 10 July 2016

Learning to Drive! and other stuff

Harry is currently learning to drive, to obtain his drivers license and gain some independence. His friend Michiel from Belgium has recently passed his test, so many congratulations from us all Michiel.

Harry is learning in a car with automatic gears, this is due to ease of driving because of limited movement in some of Harry's joints. This month he will be sitting his theory test and once he has passed this we can concentrate on getting him ready to pass the practical test, then it's out onto the open road and the driving adventures that follow.

Not much more to add other than it has been a quiet year for Harry, he's finished his exams in his first year at sixth form and we will know in August if he has passed them.
His dog Zeus is now 14 months old and bringing so much joy into all our lives, he and Harry really are the best of buddies.

Tuesday, 8 March 2016

Transition from children's services to adult services!

First part of Harry's transition into adult services commenced today. We met his new consultant rheumatologist and consultant paediatrician. Lots of X rays done to check on the progression of his degenerative arthritis. Referral made back to see a physiotherapist, adult field of course
smile emoticon
Feeling confident that the transition will go smoothly with the other healthcare professionals too.