Last year, Luke, 13, complained of a sore neck. His granny – and primary carer - Lindsey took him to Darlington Hospital for an ultrasound and blood tests. He was diagnosed with T-cell acute lymphoblastic lymphoma, a cancer of the blood.

Before Rainbow Trust, Luke had not been out or seen friends for 10 months.

Family Support Worker Monica has helped with Luke’s anxiety and lack of confidence and provided respite for Lindsey.

When Luke was diagnosed, life changed dramatically for the whole family. Luke endured intensive chemotherapy, multiple blood and platelet transfusions, long periods of isolation and he had to leave school because of the treatment.

Luke’s grandmother Lindsey became his primary carer, alongside caring full time for Luke’s mum Laura, who is disabled. Their lives became a relentless cycle of hospital visits and treatments.

Luke, now in the maintenance stage until January 2027, will receive chemotherapy every two weeks, at home or in hospital.

Before Rainbow Trust, Luke had not socialised for almost 10 months. Family Support Worker Monica has helped with Luke’s anxiety and lack of confidence by taking him out on trips with other seriously ill children. She has provided respite for Lindsey.

Luke says: “When they told me I had cancer we all burst out crying. Family Support Worker Monica is the nicest person I’ve met. Monica makes me laugh and it makes me happy to be around different people. Rainbow Trust has made a big difference because it's nice for me to go out and meet new people, and Monica is the nicest person I've met. It's made a very big difference to everything in the isolation I've been through.

“Monica’s kind. She’s taller than me. I’m going bowling soon with Monica. The first time I won. I want to beat Monica.”

Luke’s gran Lindsey says: “The last 11 months have been horrendous for Luke. Before Rainbow Trust I felt like we didn't really have anybody to reach out to.

“It's been really good for Luke, because for the last 11 months, he spent all of his time with me, his mum and auntie. It was lovely for him to get out with Monica and do something enjoyable, meeting other people, and socialising rather than just being around us all the time, because we did find he was getting quite clingy with me.”

At five days old, Elodie was diagnosed with a rare genetic disorder, Edwards’ Syndrome. Now 18 months old she is defying the odds: most babies with the same diagnosis do not live past their first birthday. Her parents, Jess and James, care for her round the clock, taking it in turns to work and sleep.

Rainbow Trust Family Support Worker Laura has become a vital source of support for the family, providing practical and emotional support so her parents can have a break from Elodie’s hospital bedside, work, sleep and cope everyday. Laura has a very special bond with Elodie.

Elodie also has a hole in her heart, so if she gets too upset her oxygen levels drop rapidly so they have to keep her calm.

Elodie’s very low muscle tone means she cannot hold objects or entertain herself, she struggles to sleep, often waking every hour. Her parents are permanently exhausted, juggling Elodie’s illness with wanting to cherish every moment they have together.

Family Support Worker Laura began supporting them six months after Elodie was born. She has become a lifeline.

When Jess and Elodie were in hospital for five weeks earlier this year, Laura enabled them to have a much-needed respite by sitting with Elodie so they could leave her bedside.

“Knowing Rainbow Trust Family Support Worker Laura has got the experience with so many other families means we don’t feel so isolated.

“Laura has always come to the hospital during Elodie’s stays there which was a huge help because we didn’t want to leave Elodie in hospital on her own. We hadn’t left her before, one of us was there 24 hours a day for three weeks and Laura was one of the only people we left her with. That was a relief to know that we have this extra trusted family member almost.

“We have probably had no more than an hour’s sleep at a time since she was born, apart from when it’s our turn to work the next day.

“During winter we have to keep away from everybody which is pretty depressing. When we were in hospital for five weeks it was really scary and exhausting.

“It’s hard enough just to eat some food or make a coffee. When Laura’s here I always end up with a huge to do list and I can actually get some things ticked off on those days. The main thing I always want to do is have a shower because that always seems to just get pushed further and further down the pile because night times are disastrous.

“It’s constant trouble shooting. She doesn’t seem to need as much sleep as other babies her size or age and she wants lots of interaction and attention. She can’t hold her own bottle and because she is the size of a five month old she still has a bottle every couple of hours.

“It’s a huge relief knowing Laura is coming and that Elodie is going to have a nice time and be stimulated and happy for those few hours.”

When Louie was diagnosed at 10 days old with a genetic condition, CD40 ligand deficiency, which only affects males, family life changed forever for Louie, his parents Rebecca and Paul and Louie’s older sister Iona, aged four.

At just seven months old Louie was admitted to the Great North Children’s Hospital in Newcastle in February 2024, where he underwent a stem cell transplant with stem cells donated from his dad, Paul.

Within the first week of Louie’s hospital stay, Rebecca and Paul were introduced to Family Support Worker Shelly. Before Shelly stepped in, Rebecca and Paul were forced apart, juggling taking it in turns to stay with Louie in hospital in Newcastle and looking after their daughter, Louie’s sister Iona at their home three hours away.

As Louie’s condition required constant care, Rebecca and Paul faced the overwhelming task of juggling hospital stays, their four-year-old daughter Iona’s care, and their own mental well-being.

Before Rainbow Trust, Rebecca and Paul were taking it in turns to be with Louie in hospital. Rebecca would stay in hospital with Louie from Monday to Thursday and then swap with Paul to takeover from Friday to Sunday.

Without Family Support Worker Shelly, they would not have had quality time together while Louie was in hospital.

Crucially, Rebecca and Paul trusted Shelly to stay by Louie’s hospital bedside while they spent some time together.

“We instantly trusted Rainbow Trust Family Support Worker Shelly and were happy to leave Louie with her for that amount of time.

“We spent nine weeks in hospital in complete isolation, because of the risk of infection during Louie’s chemotherapy. Some days I couldn’t even leave the room, it was really hard mentally, but you just have to get through it. Shelly’s support has had a positive impact on our mental health by allowing us that time out. It was so intense, 24-7.

“His little face used to light up when Shelly came into the room: he loves Shelly. I think he liked the nurses, but obviously he was worried that they were going to do something to him. But obviously, because he was a baby, he didn't really understand, but he did definitely recognise Shelly.

“It was a struggle to get any sleep so we swapped over every three days. Before Rainbow Trust we were like ships in the night. Paul and I wouldn’t have been able to have a break together. Some weeks I wouldn’t have had a break at all if it wasn’t for Shelly and Rainbow Trust. I wouldn’t have been able to leave the hospital room all day.

“Without Rainbow Trust we wouldn’t have been able to go out and do normal things like get a coffee. Things you take for granted.”