Horsham couple raise £10,000 for charity that cared for their daughter

A shock diagnosis

Little Leah George was a very happy baby. Her initial development was completely on track, and it wasn’t until she was around eight months old that her parents, Claire and Dean, realised she was no longer putting on weight and this was starting to impact meeting some of her milestones. Initially this was put down to bad reflux or dairy intolerance.

Then, in December 2021, Leah suffered a shock respiratory arrest. It was only a few days later, on Christmas Eve, that Dean and Claire received her devastating diagnosis: Leah had the very rare, rapidly progressive Gaucher disease type 2, with a life expectancy of between one and two years old. At the time, Leah was approaching her first birthday.

Leah was cared for at the Evelina London Children’s Hospital, which is how the family first heard about Chestnut Tree House. “Initially, we were told it was highly unlikely she was going to leave hospital,” says Claire. “Then suddenly her stats turned around and we were told we might need to start planning for her to come home. That’s when the medical staff started mentioning Chestnut Tree House.”

The ‘new normal’

Dean says: “At the hospital, it is easy to rely on the doctors and nurses being around if something goes wrong. And suddenly, if you are at home, it’s up to you. We didn’t really have that confidence in the hospital because it was just too easy to leave things to the expert medical staff. Staying at Chestnut Tree House for a week when Leah left hospital was a really nice way for us to gain confidence in our ‘new normal’, which involved a suction machine, oxygen and the medicines.

“When Leah made it home, we were so proud of her resilience and strength. We also felt confident on managing this next chapter of Leah’s journey and meeting her needs.”

Leah spent six precious weeks at home with her family, with support from the Chestnut Tree House community nurses enabling her to enjoy getting out and about, including attending baby sensory classes, going to parks with her older sister and even to the theatre.

Leah’s older sister was four and still needed routine. Sibling support from the hospice was invaluable. “We did play therapy and counselling. We also had support from the pastoral care team – four-year-olds ask some very deep questions.”

Continuing support

Leah sadly died at the age of just 14 months, while the family was visiting Claire’s parents. Afterwards, Leah and her family spent time in the Stars bereavement suite at Chestnut Tree House and since then Dean, Claire and Leah’s older sister have been back for counselling sessions and remembrance events.

It was during their first respite visit that the couple decided they wanted to raise funds for the charities that had helped so much on Leah’s journey. “We wanted to help parents who very sadly find themselves in the same situation as us, now and in the future. We want that support to continue for them as it did for us,” says Claire. “The generosity from our friends and family has been so amazing and I think the focus on fundraising gave us a good distraction from our grief in some ways.”

Initially, they set up a JustGiving page which family and friends, desperate to help, donated to and shared with their own networks. “I think it resonated with anyone who has children and because it all happened around Christmas time, the empathy and emotions were heightened,” says Claire. “It even reached America.”

The family is sporty anyway – Dean is a former professional badminton player, now a coach – and they had always hoped to take part in RideLondon-Essex 100 before Leah fell ill. “Initially, we thought there’s no way we’re going to do that, just weeks into our grief,” says Claire. “But then it turned out that Chestnut had some places, and we managed to complete it without doing much training. That was an amazing achievement which we were determined to do for Leah, taking inspiration from her strength.

Dean then got a place in the London Marathon through the ballot – and of course he wanted to run for Chestnut Tree House.”

Doing it for Leah

The run had been a long-term goal for Dean, but in the October, he hit a major hurdle. “I was diagnosed with an overactive thyroid off the back of my grief journey. I was determined to see it through, but after seeing a specialist I had to wait a while for the tablets to kick in so I couldn’t even start training until the January.

“Even then it was quite stop-start because my thyroid levels weren’t quite what they should have been. If I pushed myself too hard, the symptoms would flare up again and I’d have to take a week off. I went into it less prepared than I would like to have been and it was just a case of my long-term fitness seeing me through and having Leah on my mind.”

Since the marathon, other friends have taken on their own fundraising challenges, inspired by Leah’s strength and sunny personality. “Everyone called her Little Miss Giggles,” says Claire. “She had the best smile, with these big, round eyes that her glasses seemed to enhance even more.

“She was known for her royal waves, clapping and playing with noisy toys. She loved spending time in the Woodland Walk with her big sister at the hospice and she also enjoyed the sensory room.

“We’ve been back to Chestnut Tree House since,” says Claire. “We think that’s been very important for Leah’s big sister because she has lovely memories of our family visits there and her little sister. We couldn’t just stop going. We’ve been back for one of the remembrance events, and we still keep in contact with Nurse Louise, who was our keyworker. Obviously, the staff deal with so many people, but you feel like they’re really invested in your family too.

“In some ways, this is the charity you hope never to use. But you know, when you need it, that the support is available and so unbelievably important.”