Niamh's Story

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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.

Niamh was diagnosed with acute lymphoblastic leukaemia in May 2023, at the age of seven, after falling sick while on holiday with her family in Dorset. After weeks of back and forth from the GP and A&E, Niamh was sent to Bristol Children’s Hospital where doctors diagnosed her with leukaemia. Niamh also has cerebral palsy, which she was diagnosed with when she was six months old.

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

Julie describes the family’s lives as ‘totally changing’ when Niamh was diagnosed. Julie, who worked for the NHS, 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 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, Julie describes how 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’ve literally seen people walk on the other side of the road when they’ve 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 her picking something up. 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 (RUH) in Bath. Although life is not completely back to normal for the family, Julie says they have managed to get 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’re in the thick of it, you kind of just get your head down and get on with it. But now we’re coming out of it a bit more, it feels more difficult."

Julie explains that Niamh finds her Hickman Line (a tube that delivers treatment directly into the vein) quite distressing, and furthermore the medication she takes also affects her emotions. This is made harder by seeing her peers do things that she wants to do, but is not yet well enough to participate in.

"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."

Before Niamh’s diagnosis, the family used to enjoy going swimming – this is one of Niamh’s favourite things to do. But due to her Hickman Line, this has become increasingly difficult, and the family are not able to get out like they used to.

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 out camping together and stuff like that all the time, but that’s been curtailed a bit now. Niamh isn’t allowed on the play equipment at school and all that kind of thing. The medication has also exacerbated her cerebral palsy, which has made her muscles even stiffer so it’s 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 which has increased to three years. Julie says that 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 or anything like that, because 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 and Niamh do lots of arts and crafts together and enjoy spending time playing with dolls and toys.

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

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.

It's definitely built my confidence in Niamh being able to return to school and be able to leave her with somebody. Michelle’s support has been life changing, it really has. There are really dark days when you have a seriously ill child and you’re in the midst of it, and just having somebody that comes around and she checks in with me and make sure that I'm okay as well is so important. Rainbow Trust has been a godsend for me and Niamh.

Julie, Niamh's mum

Without Michelle’s support, Julie says she would not be as confident in leaving Niamh and Michelle’s support has also helped with Niamh’s transition back to school.

"As a parent, sometimes you naturally get worn down by it all, and sometimes you don’t want to be doing all that stuff. 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."

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Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone. We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

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