Parents of tragic toddler issue fundraising plea to help Scots children suffering terminal illnesses

The parents of a toddler who passed away after a battle with a rare disease are backing a major fundraising appeal to help children suffering from terminal illnesses.

Ainslidh Stevenson and Jamie McMillan, from East Kilbride, were heartbroken to lose their second daughter Amelia when she was just 15 months old. The adorable tot, who they nicknamed their little brown mouse, was diagnosed with Mitochondrial dysfunction syndrome 2, an illness which affects cells that create energy in your body, in 2021.

Mum-of-two Ainslidh said they first noticed something wrong with Amelia when she was around six months old.

She said she had started slumping a lot and was losing co-ordination. After initial tests came back normal, Amelia was sent to Queen Elizabeth Hospital in Glasgow for an MRI.

Ainslidh, who is also mum to Olivia, said: “When the consultant came in to give us the results his words hit me like a sledgehammer. He said: ‘It’s really bad. There are severe changes in Amelia’s brain. If she has what I think she has then she doesn’t have long.’

"We had just went to the doctor’s six days ago, and now someone was telling me our little girl was going to die.”

Amelia underwent more tests but quickly took a turn for the worse. Her heart started to fail and the doctors told the family to say their goodbyes.

Ainslidh added: "It was agony, but the team put her into a coma to let her rest and give her a chance to fight. And boy, was she a wee fighter! Amelia made small improvements, eventually coming off her ventilator."

Amelia was then diagnosed with Mitochondrial disease. Ainslidh added: "It was literally draining the power of life from her and they couldn’t even tell us how long she would live. We just wanted to make the most of the time we had.”

The family were later told Amelia would not live to see her second birthday days before Christmas in 2021. Just a few months later, she developed inflammation around her brain, causing seizures. Doctors gave the family the devastating news that her little body was shutting down.

Ainslidh said: "They asked us where we would like Amelia to die. In that moment we knew we had to take her back to Robin House, a hospice run by CHAS. We went by ambulance to the hospice and they had a room ready where we could stay together as a family.

"I immediately snuggled up in bed with my baby girl, with Jamie and Olivia by our side. It was so peaceful. If we had to lose Amelia then it really was the perfect goodbye. Our ‘little brown mouse’ took her last breath in my arms on 29 July 2022, just 15 months old.”

Ainslidh said the family were supported by CHAS, a children's hospice charity, throughout Amelia's illness and are now backing their new fundraising campaign to ensure families of dying children are supported at every single stage of their child’s palliative care journey.

Speaking about CHAS, Ainslidh said: "“As incredible as CHAS was during Amelia’s short life, they were even more amazing in the days after her death. I don’t have the words to thank them. That’s why we are honoured to be part of this fundraising appeal in Amelia’s memory to help encourage more people to donate to help this amazing charity help more families like ours.”

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