Ella and Chloe’s Butterfly Journey

14/02/2026

Thinking of all the family and his friends ###x

Our sweet little friend, Elias, a beautiful young boy who brought so much light into this world, has gained his superhero wings.

The love and joy he gave will remain with us always.

Beautiful brown eyed boy, run to your friends - you are free.

Thinking of your wonderful family and keeping our arms tightly around them ❤️💙💛

12/02/2026

06/01/2026

We are so sad to hear of the passing of Martin, he was such a lovely man with a kind soul who Ella adored. May he now RIP ###

03/01/2026

Happy 19th birthday to our incredible Ella Mae 🎈

You have shown us that life isn’t about how long it is, it’s about how deeply it’s lived. And you live with so much heart, strength, and light that it leaves a mark on everyone lucky enough to know you.

We are endlessly proud of you. Endlessly grateful for you. Endlessly in love with you.

Today, and always, we celebrate you 🤍

Photo: Ross Willsher Photography

26/12/2025

Merry Christmas to all our friends, family and followers! We hope you have had a wonderful time with your loved ones x x x x

📸 Ross Willsher Photography

17/11/2025

Fly free Raven ###

27/10/2025

There are literally no words to describe the last couple of days except they were filled with love, joy, heartbreak, understanding and family. We are so lucky we get to attend this every year, thanks to all of you who help fundraise and support us. ❤️💛💙

Not only do we get quality time with other families we get to see specialist doctors and researchers from all over the world, learning of any updates. We have been doing a study with Dr Kang over the past couple of years now, which we feel is a very small part in helping the research into the history of CS. 🌍

Ella was confirmed at this meeting that she has dementia, something that has come up a couple of times at recent appointments. So we will start processing that and learning ways to keep her brain active. 🧬

But for now feel the joy and love in these photos… until next time 🫶🏻

10/10/2025

Hi, and welcome to Amy and Friend's Cash for Kids Sports Challenge fundraising page! We're raising money to help us give young carers a break they deserve 💛 These young people are often the quiet heroes in their families. They take on caring roles at home, face emotional challenges, and can feel ...

22/09/2025

I am doing a bonus ball, raising funds for Amy and Friends through the cash for kids challenge with a chance to win £5000 for the charity going towards the siblings annual camping trip that Alex takes part in every year.

It’s £5 a number £250 to the winner and £250 to Amy and Friends.

If you want to play please select your number and send £5 to PayPal [email protected] other ways available just dm us. Winner will be announced as soon as all the numbers are sold.

Thank you so much 🙏

If you are holding a cake stall, raffle, anything raising funds for charity and would like to get involved in the cash 4 kids challenge for Amy and Friends please message me x x

15/09/2025

A huge thank you to everyone involved in Ella’s Big Day on Friday 5th especially Forrester Park Golf & Country Club , Grandpa, Sid and friends who raised an amazing £5,700 for Amy and Friends Cockayne Syndrome and Trichothiodystrophy Support

Thank you!

02/09/2025

Where did August go???

We had a blast and can’t believe we are at the end of the holidays already!

We have been to the park, the beach, hospice open gardens, Bubble experience, Twist Museum, a trip to Southend, Greenwich to see mummy’s friend, who is visiting from Australia and lots of visits to see family and friends.

A big thank you to Amy and Friends who took mum to see Tina Turner in London and Alex to Anglesey for the annual sibling camping trip, which gave him a couple of days away from his caring role at home. We are always so very grateful. Here’s to September…