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.

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

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.

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.

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.

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.

Happy Birthday Harry!

Today Harry has reached another milestone and celebrated his 17th birthday.
Happy Birthday little man xxx

Thank you

A Huge thank you to Martine & the team at Borg Warner turbosystems, Bradford, who have raised £1750.00 for Progeria UK. Thank you also to Sue Ibberson for nominating Harry

Harry & Zeus

On the 4th July, we welcomed Zeus, a border terrier puppy for Harry. Zeus has settled well and is an honorary member of Team Crowther.

They have a great friendship as you can see from the photo. They love to snooze together :)

Sleep well Hayley

On Thursday 2nd April at 9.39pm with her Mum & Dad holding her, our beautiful friend Hayley fell asleep. She was 17 years & 4 months old.
She fought so bravely but lost her battle to pneumonia. We will miss you so very much Hayley and you will always be in our hearts

This photo is the first photo H&H had taken together in London, May 2010

This is one of the last photos taken in Denmark, August 2014

The very last photo ever taken of H&H was in Turkey, September 2014 and this photo sums up their friendship perfectly.


Memories to last a lifetime

xxx

Update

We can not believe that in just a few months Harry will sit his final exams in school, ready for the next phase sixth form/college. Where has the time gone. It has literally flown by.

In April Harry will be attending his school prom. We already have 'the suit' and Harry has a date... Photo from Harry's Prom :)

Harry is very much looking forward to the next Progeria Reunion this August being hosted by Bjorn and his family. We are already busy putting on our fundraising hats in order that the families in the UK living with Progeria can travel to the reunion.

For now, thank you everyone for following this blog and we will be back soon. xx

"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...

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.

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.