Friday, 1 February 2019

No longer a ‘Teen’

Happy 20th Birthday Harry. 🎁No longer a ‘Teen’ now in your ‘Twenty’s’ have a great day celebrating this milestone. 🎉So proud of you. Lotsalove always Mum & Dad xxx   🎈 🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈

Wednesday, 5 September 2018

Happy 1st Birthday Isla and other news...

Harry's niece Isla is turning the BIG ONE today. Isla is Harry's only niece (so far!) and they adore each other.

Harry is very much looking forward to travelling to Portugal in October to attend this years Progeria reunion, hosted by Claudia (pictured with Harry below) and her family. This wiil be an action packed few days filled with lots of exciting trips, love and laughter. Watch this space for updates.

Sadly for our Progeria Family Circle, at the start on 2018 we said  goodbye to Lucy from Ireland, who fell asleep on January 1st.  Lucy was just eight years old.  In the photo below is Harry with Lucy and also Hayley who gained her Angel Wings on the 2nd April 2015.  We all miss them so much.

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


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.

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.