Name: Rainbow Trust Children's Charity
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Meet Niamh and her family

Julie and Paul are parents to nine-year-old Niamh and 12-year-old Daisy. Julie describes Niamh as ‘feisty’ and a ‘real chatter box’ who’s favourite thing in the world is ‘probably brownies’. She is a typical nine-year old who loves going to the park and imaginative play – especially with her dolls or doing arts and crafts.

After falling sick while on holiday with her family in Dorset and weeks of back and forth from the GP and A&E, Niamh was sent to Bristol Children’s Hospital where doctors diagnosed Niamh with lymphoblastic leukaemia in May 2023, at the age of seven.

"From May 2023 when she was diagnosed, to January this year, we have been in and out of Bristol Children’s Hospital for quite a few long stays. Niamh has had to endure really intense treatment."

Julie, who worked for the NHS, had to stopped working for nine months to be able to care for Niamh, and take her to frequent hospital appointments which often involved stays of up to 10 days while she received treatment. As a result, Niamh stopped attending school and her older sister, Daisy, spent a lot of time with their dad, Paul, away from her mum and sister. The family were separated and not able to socialise as they did before due to the risk of infection.

Although Julie’s family and close friends were extremely supportive throughout Niamh’s diagnosis and treatment, a lot of people fell away when Niamh became ill.

“Having a seriously ill child can be very lonely, and some people kind of stay clear of you. I have literally seen people walk on the other side of the road when they have seen me. I think they just don’t know how to talk to you about your child with cancer."

"We didn’t really have anybody round because of Niamh’s treatment, and the risk of catching an infection. Daisy couldn’t have her friends round either. Our lives became very very small.”

Julie, Niamh's mum

In January 2024, Niamh went into maintenance treatment and is currently under the care of the Royal United Hospital in Bath. Although life is not completely back to normal, the family have regained some normality back to their daily lives. However, now that Niamh has finished her initial treatment, the reality of their situation and the difficulties of having a seriously ill child have begun to have an effect on the family’s mental health.

"When you are in the thick of it, you kind of just get your head down and get on with it. But now we are coming out of it a bit more, it feels more difficult."

Niamh finds her Hickman Line (a tube that delivers treatment directly into the vein) quite distressing, and the medication she takes also affects her emotions.

"Niamh still can’t do what her peers are doing, and she finds this difficult. When she was in hospital, she was unwell physically, so it didn’t affect her as much. But now life is getting back to normal a bit more, that frustration is greater."

Niamh finds her Hickman Line (a tube that delivers treatment directly into the vein) quite distressing, and the medication she takes also affects her emotions.

"Niamh still can’t do what her peers are doing, and she finds this difficult. When she was in hospital, she was unwell physically, so it didn’t affect her as much. But now life is getting back to normal a bit more, that frustration is greater."

We are really wary of going anywhere in case we need to get to a hospital quickly, or because of the risk of infection. We used to enjoy going swimming and camping together all the time, but that has been curtailed now. Niamh is also not allowed on the play equipment at school. The medication has also exacerbated her cerebral palsy, which has made her muscles even stiffer so it is harder for her to do the things that she used to.

Julie, Niamh's mum

Unfortunately, after missing nine months of school for her medical treatment, Niamh has experienced a learning delay. This setback has significantly impacted Niamh's confidence.

Just beginning secondary school when Niamh was diagnosed, 12-year-old Daisy has also found the past year extremely challenging.

"There’s been a lot of change over the past year, and this has been hard for Daisy. She’s been away from me a lot, along with starting a new school, it is a lot to deal with. But she has support in place which is good."

Julie was first introduced to Rainbow Trust through a social worker on Niamh's hospital ward, who then referred the family for support. Shortly thereafter, Family Support Worker Michelle began working with the family. Michelle visited Niamh at home before her return to school, engaging her in play, arts and crafts, and fun outings. These visits provided Julie with valuable time to catch up on essential tasks and offered her much-needed respite.

"Michelle’s support gives me an opportunity to go out for a dog walk, or go to the shops. Before I couldn’t even do those little things. Michelle was really clear that her support was there to benefit all of us, and it is just bliss."

"Michelle is Niamh’s number one favourite person; she absolutely adores her. It has been really nice for me too because when your child is sick you worry about leaving them, but I have always felt really secure with Michelle, which means I am able to leave Niamh while I take the dog out for a walk, for example."

Julie, Niamh's mum

Michelle and Niamh do lots of arts and crafts together and enjoy spending time playing with dolls and toys. As Niamh's health has improved and she's been able to venture out more, Michelle has taken Niamh to farms, pottery classes, and the park. Knowing that Niamh is safe and happy with Michelle has brought immense relief to Julie.

Julie also explains that Michelle’s support has enabled Niamh to communicate with someone else apart from her and gives her an opportunity to do creative things with someone new.

Michelle’s support has also helped with Niamh’s transition back to school, has enabled Niamh to communicate with someone else apart from Julie and gives her an opportunity to do creative things with someone new.

"As a parent, sometimes you naturally get worn down by it all. Having Michelle’s support is like a breath of fresh air. Niamh always looks forward to her coming over and can’t wait to get out. For me, to see Niamh so happy and smiling when she’s with her, is just amazing. She has made such a difference to our lives."

Michelle’s support has been life changing, it really has. There are really dark days when you have a seriously ill child and you are in the midst of it, and just having somebody that comes around and checks in with me and makes sure that I am okay as well is so important. Rainbow Trust has been a godsend for me and Niamh.

Julie, Niamh's mum

With your help Family Support Workers like Michelle can make the challenges that families living with childhood illness face that bit more manageable.

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Niamh's Story

Meet Niamh and her family

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