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Meet Rowan and Annie

When Rowan and Annie aged three were diagnosed with a rare cancer-like condition just 10 days apart life became a constant cycle of hospital visits, chemotherapy and exhaustion. 

In March 2024, aged 19 months Rowan was admitted to Alder Hey Children's Hospital after months of being unwell.

“I’d been beside myself for months about Rowan because she had all of these symptoms that were being diagnosed as things like constipation or cradle cap,” said mum Michelle.

After two weeks of tests, Rowan was diagnosed with Langerhans cell histiocytosis (LCH), a rare disorder where an overproduction of abnormal immune cells can form lesions and damage tissues.

Although Annie had milder symptoms, Michelle and dad Thomas pushed for further testing after noticing ear infections and a rash.

Ten days later, Rowan’s twin sister Annie was diagnosed with the same condition. 

Both girls immediately began chemotherapy on different treatment cycles, which were later extended by an additional six months. With no family nearby and two toddlers on treatment, Michelle and her partner Tom were dealing with their new reality. 

“Having two children on chemo at the same time, and on slightly different cycles was a struggle logistically.”

Rowan spent a month in hospital after her diagnosis and Annie later needed hospital stays because of infections caused by treatment. 

“One of us was almost always at the hospital with one of the girls,” said Michelle. 

Every Monday was chemotherapy and the rest of the week was filled with visits from nurses. Both girls had central lines fitted, bringing a constant worry about infections and many emergency trips to hospital whenever they developed a temperature. 

“We have lots of friends here, but no family in Liverpool. Our families did their best and came when they could, but it’s the day-to-day where you struggle the most. We were just worn out.”

Michelle, an international lawyer at the University of Liverpool had to juggle work all while supporting the girls. 

“My workplace was really understanding but everything just changed overnight.”

As Michelle and Tom adjusted to life with two seriously ill children, Michelle’s mother became seriously ill in Ireland and died in May 2024.  

“I didn’t have a choice but to keep moving forward and looking after the girls. I’ve always said that the girls being sick took the edge off my mother dying, and vice versa. We saw Kirbi every week going forward and she slotted in right away. The girls absolutely adore her and regularly ask where she is.” 

Kirbi became a constant during an incredibly uncertain time.

“Rainbow Trust was a proper lifeline for us and has been the most valuable encounter we had in our treatment, to be honest. Kirbi became our backbone. Rainbow Trust is something reliable in a very unreliable time. There are so many good charitable organisations, but they were the one that changed things for us. Kirbi gave us a little bit of grounding and hope,” said Michelle.

With both girls on treatment, Michelle and Tom felt like they each always had one child in their arms.

“Kirbi’s support gave us time to rest, to read, but most importantly to have an uninterrupted conversation to chat about how we were. You don’t really want to be complaining but with Kirbi, I felt like we could just talk and lay out everything that was going on.”

The twins were out of nursery for a year and a half because of infection risks, and Michelle often felt guilty that they were missing out on normal childhood experiences. 

“The world puts a lot of pressure on parents to have their children doing all sorts, soft play, birthday parties, football, nursery. I started to worry they weren’t having enough opportunities.” 

Kirbi helped ease that guilt too.  

“Rainbow Trust would bring this bag of crafts to our house. When you’re exhausted, playing with children can be really hard but Kirbi and the girls would make cards, do painting, all sorts of stuff which helped with the guilt.” 

Michelle, Rowan and Annie's mum

Kirbi gave Michelle space to leave the house, go for a walk or simply clear her head. 

“Kirbi would also visit us in hospital and give us an hour away from the ward to chat.” 

For Tom, the support often meant something simpler but just as important: sleep. 

“He cannot live without sleep,” Michelle laughs. “Kirbi gave him his naps. He would disappear upstairs and get 40 minutes which is so important if you’re getting up at 11pm to drive a child to A&E.” 

Rainbow Trust helped create happy memories during a very difficult time, including a trip to the aquarium using vouchers provided by the charity. 

“It’s just those little nice days in the middle of mayhem that were good. We still talk about the shark banging his nose on the glass,” Michelle says. 

The girls are now on maintenance treatment and back at nursery, but Kirbi will continue to support the family for as long as is needed.  

“Kirbi’s support has been magical and priceless. I feel that we could not have managed without Rainbow Trust.”

“I would tell any family caring for a seriously ill child to get in touch with Rainbow Trust because you can’t really put a price on the usefulness of it. It might not even seem like a lot, an hour or two hours, but it felt like such a big, expansive time to us.” 

Michelle, Rowan and Annie's mum

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