Karen Sharkie: Willow’s story

Willow was just 11 months old when mum Karen noticed Willow wasn’t well. Her stomach was enlarged, she was pale, and she had bruises on her legs. Thankfully, a GP recognised Willow’s symptoms and she was diagnosed just 10 days later. Now in remission from juvenile myelomonocytic leukaemia (JMML), Karen shares Willow’s Spot Leukaemia story.

In May 2018, we became parents for the first time. Everything was going so well, but then Willow began to experience concerning symptoms. She was very pale, had an enlarged stomach, developed a rash, was vomiting, and had bruises on her legs.

We went to the doctor quite quickly after noticing these symptoms. Our GP was amazing and sent us straight to hospital. Looking back at pictures though, her stomach was quite round for a little bit before we saw the GP, and she had very dark rings under her eyes.

That was when, three weeks before our daughter’s first birthday, she was diagnosed with juvenile myelomonocytic leukaemia (JMML), a very rare kind of leukaemia that’s only known cure is a bone marrow transplant. To say we were devastated is an understatement. We really thought we were going to lose our little girl. But we were very lucky, and an unrelated match for a stem cell transplant was found very quickly.

She underwent three months of treatment to get her disease under control before being admitted for her transplant. Willow’s transplant mostly went to plan, but she had some skin and gut Graft-versus-Host-Disease (GvHD), so we were in the hospital for three months before we were allowed home.

We are now nearly eleven months post-transplant and she is doing very well. She has no evidence of disease and is being monitored closely still. The road to recovery ahead is long but things are all moving in the right direction. What has been so obvious through our new journey so far is how little people know about leukaemia, the symptoms and how easy it is to be on the bone marrow register. We want to use our story to help raise awareness and get more people signed up as donors. It does not take much and it’s so easy to do.

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