Let’s catch up!

 Hey everyone. 

Wow! It’s been a while since we last blogged about Harry. 

Harry is now 24 years old and an uncle to not just Miss Isla, who is 5 but also her identical twin sisters, Sienna & Olivia who will be 2 in April and  6 month old Ezra. 

In May of this year Harry will be Best Man to his brother Jack, who is marrying Anneliese, so as a family we are all looking forward to their big day. 

Harry has lost friends with Progeria over the past few years and we remember with love Raina, Claudia, Ashanti & Evra all with whom we have spent time with at our Progeria Family Circle reunions. 

The last reunion was hosted by Claudia in Portugal in 2018.  Harry flew alone from our family holiday in Florida to join his friends in Portugal for a few days of fun, laughter and most importantly LOVE.

Due to covid and costs there has not been another reunion, which is heartbreaking. Harry has visited his friends Michiel and Amber in Belgium though before the world was shut down due to COVID. 

Hopefully another reunion will be held soon. 

Health wise Harry is doing ok, still having regular appointments, he has one coming up at the bone density clinic and hopefully the 3 iv bisphosphonate infusions  have helped reduce his risk of bone fractures. The side effects were pretty horrid with flu like symptoms, headache and in particular eye pain which Harry found tough. Thankfully it didn’t last long and he’s back to his usual, cheeky self. 

Thank you for continuing to support Harry and will blog again soon xx 

Uncle  Harry & Isla 

 Ezra with uncle Harry. 

Harry’s nieces and nephew. 

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.