Hollie Evans

01 September 2014
Hollie Evans
Hollie has Down’s syndrome. In July 2009 she was diagnosed with leukaemia at just 14 months old.  Hollie’s mum tells us her story.

A long diagnosis

"When she was four months old, Hollie had little pin prick like spots all over her body. We took her back and forth to the doctors. As Hollie has always been constipated, they said these spots were a straining rash.

Months down the line the spots still hadn’t gone and more were appearing. Again we took her to the doctors and they sent us home with the same reason.

When Hollie was a year old, she started pulling herself up and crawling around. She would bruise very easily.When Hollie was a year old, she started pulling herself up and crawling around. She would bruise very easily. So back to the doctors and they said that now she was moving around she was going to bump herself. 

Something was telling me that something wasn’t right. But you take the doctor’s word for it, don’t you?

At 14 months old, Hollie was black and blue, bruises all over her. People were looking and I bet they were thinking I’d done it to her. I was nearly in tears. I changed surgeries.

As soon as we saw a new doctor, he said something wasn’t right and called the hospital for a full blood count. We went straight there for Hollie’s results.

The spots were all to do with a lack of platelets. Her platelet count should have been between 150-400. Hollie’s was nine.

We were rushed straight to the children’s oncology ward in Cardiff. On 9th July 2009, Hollie was then diagnosed with acute myeloid leukaemia (AML).
Hollie in the hospital corridor

Hollie's treatment

Children with Down’s syndrome and AML usually do better than other children with AML and seem not to need such strong treatment. The treatment Hollie is having is still on trial – it's called the ‘Down’s syndrome 2007’ protocol.

It's the same chemotherapy, just less of it. Hollie's had three cycles so far, only one to go.

Not once has she taken the smile off her face. She’s always running up and down the corridor in her walker, chasing the doctors and nurses – us running behind her with her drip stand.

The photos are from when she first went into hospital to present. There are a couple of photos with Hollie and Joe Calzaghe and Charlotte Church. They absolutely adored Hollie. Hope you like them.

Thanks so much for taking your time to read Hollie’s story.

I just want to show everyone how strong and brave my little princess warrior really is.  She makes me so proud.”

Hayley Stanley (proud mummy).

Hollie's update - July 2014

In December 2013, Hollie celebrated being five year all-clear by having at least 10 inches of her hair cut to donate to the Princess Trust.

In July 2014, she was given the all clear.

Leukaemia and children with Down’s syndrome

For reasons that are not fully understood, children with Down’s syndrome have a greatly increased risk of developing leukaemia compared with other children.

We are funding a number of research projects investigating leukaemia in children with Down’s syndrome. Most children with Down’s syndrome develop a different, less common form of leukaemia than other children.

By understanding more about why children with Down’s syndrome are more likely to develop the disease and finding out more about how it develops, scientists hope ultimately to develop improved treatments for all children.

Read more: research we’re funding into leukaemia development in children with Down syndrome | Commonly used terms in treatment

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