Children with rare immune disorders find their herd

Many children who have undergone stem cell transplants to restore their immune systems after being diagnosed with rare immune disorders have found their herd.

It can be incredibly isolating for children and their families to learn that they have a rare immune disorder. For children like Jasper and his PIK3CD gene mutation - this makes him the only known child in Wales with this diagnosis.

So you can imagine how excited he and his new friends were to discover that he would be heading to Chester Zoo alongside 23 other families who have spent long periods of time in hospital. They'd be spending the day together, sharing experiences and, most importantly, finding their herd of those who have lived through similar (but still very unique) stories and treatments.

In over 30 years, this is the first event of its kind hosted by The Bubble Foundation - apart from our large anniversary and retirement celebrations of course! - bringing together children and families who have experienced rare immune disorders and stem cell transplantation.

We were incredibly grateful to have Louie’s Trust alongside us, who were instrumental in helping create this special day. We’ll be giving them a very special shout-out further down, because this day simply wouldn’t have happened without them.

Trustee, Dan says:
"It is wonderful to see that this year alone, we have begun connecting families with support and networks even earlier in their journey, sometimes before they have even been admitted to the Ward, to help close the gap in them feeling alone. Now, through experiences like our zoo trip, we are also able to support families beyond their stay on Ward 3. helping them build new friendships and memories."

Some shots of the day

For families affected by rare immune deficiencies, finding other children and parents who understand what they are going through can be incredibly important. Many of these children spend long periods isolated from friends, family and other children while they receive treatment to rebuild their immune systems.

Coming together with other families who have experienced a stem cell transplant, prolonged hospital stays and the challenges of living with a rare immune condition gives children the chance to realise they are not alone. They can share experiences, make friends and, perhaps most importantly, find their herd.

Parent Sophie said:
"For many of the families who joined us, hospital stays, treatment, transplants and long periods of isolation have played a huge part in their lives. Every child has a different story and every family has taken a different path, but they all share an understanding of what it is like when hospital becomes a part of family life.

So this weekend was about much more than a trip to the zoo. It was about bringing together families who get it, without having to explain.

The children got to explore the zoo, spend time with their families, take part in special ranger games, make keepsake hand animal prints, build penguins and, most importantly, just be children. Families also had their own private space to use as a base throughout the day, where they could enjoy lunch together, chat, meet others and take a little break before heading back out to explore. The two charities may support children and families in different ways, but the reason for bringing everyone together was the same. Every family there knows, in one way or another, what it is like to have a child in hospital. Some families have experienced transplant, some have faced long admissions, complex treatment or life-changing diagnoses. Some knew each other already, some had only ever spoken online and others arrived knowing nobody at all. But on Saturday, none of that mattered. They were simply families enjoying a day together, sharing experiences if they wanted to, making new connections and watching their children have fun."

A few other quotes from the day:

“Seeing all the children together was such a special moment. When you spend so much time on the ward being careful and keeping everyone safe, you can sometimes forget that there are so many other families going through similar experiences. Seeing everyone together, happy and mixing, was really heartwarming and showed just how far all of the children have come”

“It was lovely being able to recognise other families as they made their way around the zoo”

We also received a particularly lovely message from one family about being able to look back on an incredibly difficult period in their child's life in a more positive way:

“It will always be a part of Charlie’s story, and being able to turn it into such a positive experience and a celebration gave Dom the opportunity to talk about it with Charlie in a really positive way. Charlie is starting school and has been asked to take three things in that tell his classmates a little bit about him, and he has already decided that his Bubble T-shirt, Louie's Hat and penguin are going with him! 🥹🫧"

That probably says more about what days like this can mean than we ever could.

Hand painting & crafts inside Chester Zoo

As part of their day at Chester Zoo, our families also got creative with the zoo’s Hand Art experience, turning handprints and fingerprints into colourful animal-inspired keepsakes. It was a lovely opportunity for children and families to make something together, creating a special reminder of a day filled with fun and new friendships.

Our families also had the chance to transform into their favourite animals with some fantastic face painting at Chester Zoo. From colourful animal faces to glittering designs, the children loved getting into character, with some adults joining in the fun too. It was another little moment of joy that helped make the day extra special, giving families the chance to simply have fun together and make memories away from the Ward.

Penguin Party!

Marvellous Mascot fun

Not to forget the Animals!

Our amazing volunteer Photographer Phil Punton https://philpunton.com captured the whole day and also captured some amazing photos of the animals on the day. Thank you so very much Phil who travelled down with good friend and retired Charge Nurse and Bubble Foundation Treasurer, Neil!

Louies

We're so happy to have collaborated with Louies to make this event happen and our family day to Chester Zoo in August 2026 simply wouldn't have happened without them. Here's to many more collaborations with them!

https://www.louiestrust.org

Louie's is a North East charity, registered charity 1212933:
"Founded in memory of Louie Taylor, we are a charity born from personal experience, dedicated to supporting families every step of the way when a child is in hospital. From the very first day of admission, through treatment, and even after returning home, we provide comfort, practical support, and a sense of normality during what can be an overwhelming and challenging time. Our mission is to ease the day to day pressures, create moments of joy, and help families focus on what truly matters, spending time together and making memories that last."

Parent of Jasper and board member of the Bubble Foundation Sophie was the key to making this happen and joining both charities together. Thank you Sophie.

A few from the day