The mum of Ava Harris, from Merseyside, has paid tribute to the “funny and playful” eight year-old who tragically died of a rare condition with the first symptoms affecting her legs
A ‘funny and playful’ eight-year-old girl has tragically died of a rare condition that came to light after she told her mum her “legs were sore”.
Ava Harris was diagnosed with metachromatic leukodystrophy when she was just two -year-old and doctors told her family from New Brighton, Merseyside, that she would eventually “lose all abilities” as the disorder causes a progressive loss of physical and mental skills.
Sadly, Ava last December died after contracting pneumonia and in a heartbreaking tribute Katie Lowe, her mum, told how Ava was “funny, playful” and a “real girly girl who loved everything Disney.”
The 31-year-old added: “Just after she got sick our friends and family organised a fundraiser and took her to Disneyland Paris. She loved it. She was Disney mad, we even have a Disney tree at Christmas.”
Katie said when Ava was born “everything was perfectly fine” and the family were living a normal life but when the youngster turned two that problems began to arise. “She started telling me her legs were sore. We were back and forth to the doctors trying to get to the bottom of it,” she told the Liverpool Echo.
“We took her back to the doctors when she started choking on food and drink. The GP referred her to a nutritionist and she had an MRI scan in August 2017. She had the scan and we didn’t think anything bad was going to happen but, when she came back up the doctors called us into a room and told us she had a brain disease that was called metachromatic leukodystrophy.”
Katie said the family had “never heard of” the disorder and “didn’t have a clue what it was”. She added: “The doctors told us that she was definitely going to lose all her abilities until she passes away. It didn’t feel real but soon after she stopped being able to walk and lost her speech, then her muscles in her throat stopped working. She got really poorly.”
Last December Ava woke up with a “rattle on her chest.” Katie said she thought it was a chest infection and took her to the hospital to get antibiotics. She added: “I took her into hospital and we found out she had pneumonia, they said there was nothing they could do. We managed to get all of our family and friends there in time. It was such a shock but I would rather the shock than her suffering, it was so peaceful for her. We were in a secluded room and they put Disney songs on for her, it was as nice as that situation could have been.”
Katie says it “still doesn’t feel real.” She continued: “I feel like I can still feel her around me, she is still in my heart and I feel like she is always with me. As soon as I think about reality I just can’t cope. She is still here. I have to think to myself Ava was so brave so if I can have just a little bit of Ava’s strength and carry on for her I will be happy with that. It’s hard.”
The mum said the family wouldn’t have had the strength to get through what has happened without the support of Claire House, a charity that helps seriously and terminally ill children. She said: “Claire House was like a saving grace for us. They helped me, her dad and everyone through everything. We had days out with them, overnight stays, everything. They were brilliant.
“I can’t explain how much they helped us. They went above and beyond and made it so special. Even now I get counselling every week at Claire House, they have been constantly involved.” The family have since raised over £2,000 for the hospice as their way of saying thank you for the continued support. Katie added: “I want to give back as much as I can for them and raise money to help them and keep Ava’s memory alive.”
