Mia was a happy, bubbly nine-year-old who was always on the go. In August 2018 she was diagnosed with a rare condition called hemophagocytic lymphohistiocytosis (HLH), where the body reacts aggressively to an infection, and she passed away eight days later. Her mum, Dawn, shares her story, and how Bluebell Wood supported her during an impossibly difficult time:

“When Mia first started feeling poorly we thought it was just a virus, but she just kept getting worse. She wasn’t eating or drinking, and spent most of her time asleep. She was taken to hospital on Thursday 30th August, where the doctors discovered she had low platelets and low white blood cells. At the time everyone thought Mia had leukaemia, but after she had a bone marrow extraction we found out she had HLH, which is really rare.”

Mia was started on a course of chemotherapy and steroids, which came with a lot of side effects. Dawn said, “At the start of her treatment, we had to make so many decisions. I had to explain to Mia that she would lose her long, beautiful blonde hair. The doctors also told us the treatment could make her infertile, but we knew that because HLH was so aggressive, this could be her only chance.

“Over the next few days Mia stayed pretty much the same, but on Sunday 2nd September she started refusing to let the nurses give her injections. She was usually so polite and even though she hated needles, it was really unlike her– her tone, everything, seemed different. The consultant told us that the HLH could be affecting her brain, and over the next week it attacked her liver, kidneys, and her lungs. On Thursday 6th September the doctors told me it had begun to affect her brain stem and there was nothing more they could do. Mia passed away the next day, and that’s when the nurses recommended Bluebell Wood. I’d heard of the hospice before, but I didn’t realise they could support children like Mia at the end of their lives. We brought her here on the Saturday and spent five days together in the Forget-Me-Not suite.

“The care team couldn’t do enough for us when we arrived. They gave us space to be alone, but we knew they were there if we needed anything. We spent what would have been Mia’s 10th birthday at the hospice and it helped being there with all our friends and family around us. Coming to Bluebell Wood gave us the time to come to terms with losing Mia, without having to think about all the big decisions we needed to make straight away.

“Now I see one of the counsellors at the hospice, where I can talk through how I’m feeling. My other children, Jenna and Kyle, are both handling things in their own way, but they know they can always come to Bluebell Wood if they need.”

Since donating money from Mia’s funeral, Dawn has put her time into raising funds for the hospice in memory of her daughter. She’s organised a winter fayre at Mia’s school and signed up a team of family and friends for our Mud Madness challenge, and is currently planning Mia’s Charity Ball on Friday 6th September 2019. Dawn said, “In just eight days, everything changed so rapidly for Mia, and our whole family. Staying at the hospice after she passed away was so important for all of us. The support they offered was priceless, so I just want to raise as much money as I can for this incredible charity.”

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