Bubble Foundation UK

Harriet and Connie at the horse show!

Helen Mylott:
"Look at these 2 RVI Hero kids. Harriett & Connie Hutton (Sarah Hutton) at a Horse of the Year Show qualifier today. Harriett spent a year on Ward 3 & Connie 7 months on ward 4. Well done today girls."

Please join us in wishing Connor a Happy 1st Transplant Birthday!

Connor Peak 14 years is celebrating his 1st transplant birthday today! His Grandma Jackie and dad Leighton wanted to pass on their thanks and gratitude to all the staff on ward 3 that have looked after Connor. He is doing well and they can't believe it's been a year since his transplant!

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Emily decided to step out of her comfort zone and take part in the 2023 Great North Run for her brother James, who we posted about earlier this week. She done an amazing job!

Emily says:

"I ran on behalf of the Bubble Foundation UK, a Newcastle based charity without which my twin brother James might not be alive today.

In 2011, James was diagnosed with a condition called Chronic Granulomatous Disease, which is a genetically inherited condition affecting about 4 in every million people. People with CGD have a faulty bone marrow gene which means that their white blood cells don't function correctly. As a result, it is a life-threatening and life-limiting condition.

James went in to The Great North Childrens Hospital (RVI Newcastle) in August 2012 for a Bone Marrow Transplant. He lived in a germ free bubble of sterile air in a room just 10ft square and was isolated from normal life for 7 weeks and had no contact with any of his family or friends. The Bone Marrow Transplant Unit in Newcastle-upon-Tyne is one of only two units in the UK and Ireland that can give children like James the meticulous medical and nursing care they need.

Without the love and care that the Bubble Foundation team gave him, James wouldn't be living the normal healthy life that he is today, so that's why I want to raise as much money as possible for them. For this I need your help, so that more babies and children can recover and live normal lives just like James has! The Bubble Foundation is a small local charity that doesn't get as much funding from the government as it deserves, so every little helps!

As much as we pretend to hate each other, and wind our Mam and Dad up to no end, James is not only my twin brother but one of my best friends, and without him my life so far wouldn't have been half as special. I'm doing the run as a way of saying thanks to the Bubble Foundation for all of it's help over the years - so please donate if you can and help me give back to this amazing charity!

Emily

We've come full circle and we're thrilled to welcome former Bubble patient James as a Trustee of the Bubble Foundation. He brings new ideas and perspectives to our board, contributing to discussions on everything from funding and fundraising to the care of families.

Here's a note from James:

"My name is James Turnbull, I had my transplant when I was 9 years old in August of 2012, almost 12 years for Chronic Granulomatous Disease.

Now at 21, I’m in my last year of university in Sheffield completing my pediatrics nursing degree with the hopes of returning to the Great North Children’s Hospital once my studies have finished.

I wanted to join the board of trustees for the bubble foundation as I will bring a different perspective as I have firsthand experience of being a patient through transplant. I hope my thoughts and opinions can provide value when discussing a child's or young person's experience and more."

Hello everyone! In case anyone has been wondering what's been going on since Gill's retirement, myself and Roz have been looking after the day to day here, posting and responding to messages. I've been told I should introduce myself so here It goes 😄

I've been involved with the Bubble Foundation for 16 years. This year I will continue to run the communications until we're all sorted. Along side this I am creating informative packs for new parents, using the research that you all helped us gather earlier in the year. (thank you again)

My personal goal is to get bone marrow transplant families the support needed even earlier, hopefully at the stage of referral, all the way to when you go back home. Just like our bubble buddies group! Can’t wait to share some updates with you soon!

This is a huge period of change for us as a charity but we're not giving up, so if you would like to help our bubble stay afloat, please get in touch about creating a fundraiser of any shape or size. (Did you see Cora's stall?!) It will be myself and Roz that you'll get through to and we will help you 1-on-1 with all the materials, t-shirts and ideas you will need.

Thank you as always,

Your Trustee, Dan x

The Bubble Foundation is saving the lives of babies born without an immune system through research, and caring in the short term by providing toys, entertainment and even food for parents and lots lots more.

Liam wrote this heartfelt song about his challenging first year with severe immune deficiency. He recorded it at 14. Now 25, and having recently had a kidney transplant, Liam is healthy and excited to dive back into music. He's spending days at a time in the studio now! You can listen to his song on YouTube https://m.youtube.com/watch?v=D0rbx_4h-D0

Liam said: "I wrote this song about my first year of life being born with severe combined immune deficiency and I’d love the page to hear it here’s the link to my YouTube I was 14 at the time this was recorded I am now 25 with new things on the way I have just had a kidney transplant also 4 months back. Now I’m well I’m getting back into the music and starting fresh"

What a great event! The Well-Versed Community Choir and band Kissed got together to raise money so we can help the families on the ward going through transplant.

Choir director Steve McGarvie said: “Well-Versed Community Choir, with members from Darlington and Bishop Auckland, performed a concert of well-known pop songs from the 1960s through to the present day, to a capacity crowd. Newcastle band Kissed came down and performed a wonderful set too. Through ticket sales we managed to raise £400 for the Bubble Foundation, a charity I have supported for many years through my other role as a member of the Smokin’ Spitfires Soul Band.”

Charlie Hardwick, singer in Kissed and our patron said: "It was such a pleasure to play on the same bill as the fantastic choir. The good people in Darlington were a great audience and their generosity is hugely appreciated" x

How good is this!? Almost ten years after being in the bubble, Cora set up a stall at her school summer fair to raise funds for other families going through a bone marrow transplant. Cora had a great day, raising £85 by selling bubble wands and hosting a game where participants guessed the bubble baby's holiday destination. Cora also has a personalised just giving checkout linked her stall https://checkout.justgiving.com/kq4ujt0sa5 x

Were so proud of everyone! 🥰

Stem cell transplant patient backs 'incredible' Bubble Unit fundraisers Lexi Johnson, who raised thousands herself for the Bubble Foundation, took her first steps after a stem cell transplant to support hardworking NHS staff on their own fundraiser.

Can you believe it? Our Ward 3 staff have done amazing!! They collectively walked 3842.9 miles in one month for our bone marrow transplant patients and their families (Newcastle to Chicago!!). Thank you to all of our for your support in the past few weeks. To contribute a message of support to Ward 3's extraordinary journey or make a donation, please visit Justgiving! x

Ward 3's 300,000 June Step Challenge Ward 3 staff are walking 300,000 steps for the June Step Challenge! Our nurses want to raise money to put together a warm welcome and information pack for our new families.

Run the London Marathon for The Bubble Foundation UK

If you already have a public ballot entry - Join the Race to Make a Difference: Support The Bubble Foundation UK

Running the London Marathon is a thrilling challenge and an opportunity to transform lives. By participating in this iconic event, you can support The Bubble Foundation UK, a charity dedicated to saving the lives of children born with severe immune deficiencies. Every step you take helps provide crucial medical research, support, and care for these vulnerable children and their families. Lace up your running shoes, join our team, and make a profound impact on the lives of those who need it most. Together, we can give these children a fighting chance for a healthier future.

&MeBMT

You Made This Possible!

Ever wondered where your donations go? While many charities might skip this part, we're thrilled to share the incredible impact of your support. Exciting updates are coming soon, but let's start with a truly inspiring story.

Thanks to your generosity, we funded Dr. Su Han Lum, now an Honorary Consultant and Senior Clinical Research Fellow in Paediatric Stem Cell Transplantation and Cellular Therapy at Newcastle University and the Great North Children’s Hospital.

Dr. Su Han received 3 months of funding from the Bubble Foundation. In that short time, she secured a major grant from the Medical Research Council and became an Academic Transplant Doctor. In April 2024, Dr. Su Han launched the groundbreaking Haplo+4kids clinical trial. This innovative trial uses memory T cells to reduce infection risks post-transplant, comparing patient groups with and without these cells, and measuring drug levels to enhance future treatments.

Just 3 months of our funding has kick-started:

- A large grant from the Medical Research Council
- Over 24 months and counting with Dr. Su Han
- Numerous other projects
- New trials to prevent infections and combat graft-versus-host disease.

As Prof Cant says, it's "Seedcorn funding" and we're good at it.
This is just the beginning of what we can achieve together. Have a look at the full story here:

https://www.bubblefoundation.org.uk/news/your-support-gave-us-dr-su-han-lum

&MeBMT

Thank you for making a real difference!

We only have 10 days left of the Ward Three 10k Step Challenge! Please give what you can to support over 20 of our Ward colleagues, they've been so so dedicated all month! x

Ward 3's 300,000 June Step Challenge Ward 3 staff are walking 300,000 steps for the June Step Challenge! Our nurses want to raise money to put together a warm welcome and information pack for our new families.

THANK YOU LEXI!

Lexi is on the ward at the moment and wanted to send this picture and video to encourage everyone doing the 10k step challenge.


Brian McFadden

We have OVER TWENTY Ward 3 hospital Nurses, dieticians, occupational therapists, consultants, domestics, play specialists and healthcare assistants walking 10k steps a day during June to save lives of our bubble babies. THEY ARE SMASHING IT! We have a new, but very familiar solo leader today! Well done that person! And we have very strong but consistent buddy up leaders too 😅Brian McFadden JustGiving Great North Children's Hospital Newcastle Hospitals Charity https://www.justgiving.com/campaign/stepchallenge x

Watch out! Ward 3 now have their personalised sponsor forms for their June 10k a day step challenge - Tabatha is very excited as you can see. Did you notice how they have cut outs of themselves and stuck them allover the walls around the Ward? They say it's for the kids to spot...and definitely not for themselves... Spot Laura under the rainbow skipping in a meadow of butterflies😂

If you're new to the Bubble and Ward 3:
Everybody now knows what it’s like to be isolated after lockdown; The children on Ward 3 are isolated in their air-locked cubicles for months at a time. No sun, no wind, no rain and no immune system.

Your donation helps give our patients a better childhood under these conditions offering toys, entertainment and pain distraction units as well as funding the research that actually helps fix their compromised immune systems. That's why the Ward 3 staff are walking 10k steps a day, for the patients and for their families too. Please do sponsor them or tell a friend to spread the word!

Thank you to everybody who has got involved so far. The Ward and I are overjoyed with your support!

Dan, Trustee x

Bubble Foundation UK Saving lives of babies born without an immune system. We’re changing Paediatric Immunology.

The 300,000 June Step Challenge has started on Ward 3!

Domestics, Nurses, Professors, Dieticians, Consultants, Occupational therapists, the whole team! Now with a grand total of 25 colleagues participating! They all have step trackers and Demi and Ellie will be sending them to Dan to update the scoreboard. They have individual sponsor forms or you can support them here or JustGiving x

https://www.justgiving.com/campaign/stepchallenge