New Year, New Post and updates

Although it’s March, we just wanted to wish everyone a Happy New Year.

Harry reached a milestone and turned 21 on the 2nd February but sadly just 4 days later on the 6th February he lost his mate, his Grandad Alan, who  sadly died in Kirkwood Hospice.  It has left us all devastated.
Harry and his grandad shared a special bond and they even travelled together for one of the Progeria Reunions in Turkey.  They shared a love of sea life and marine biology and his grandad would take Harry’s dog Zeus on a walk every Tuesday. 💙💙 He is very much loved and missed by us all.

Due to the concerns with Coronavirus (COVID -19) and the health worries/implications that this can potentially have for Harry, his place of work have very kindly arranged from him to work from home, until such time it’s safe for him to return.  As his mum, I for one am so appreciative of this move and want to personally thank them.  (So does Harry’s dad of course 😊)


Thank you for your continued support of this blog xxx

Fly High Mats 💙👼🏻

On Friday 27th December, Harry, Michiel, Amber & Miles along with family members said their final goodbyes and also celebrated the many adventures and life of their friend Mats in Belgium.  Afterwards we enjoyed Mats’s Favourite wines and enjoyed 8 of his favourite foods whilst sharing our favourite memories. Sleep well  Mats and fly high. 09.09.2002 - 18.12.2019. 💙👼🏻

BORN DIFFERENT

BORN DIFFERENT

Find out a little more about Harry in his own words in a small feature he did for the Born Different series.

Click on the BORN DIFFERENT link above to see his video on YouTube

Thank you xxx

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   🎈 🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈🎈

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.

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.

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