It was agony: Toddler's death inspires CHAS fundraising efforts

A 15-month-old who lost her life to a rare disorder has been at the heart of a fundraising campaign by the Children's Hospices Across Scotland (CHAS).

The campaign, Every Single Step Appeal, aims to ensure families of dying children receive all-encompassing support.

It was launched alongside the charity’s new four-year Strategic Plan which was developed following in-depth consultation and feedback from families and stakeholders.

The Unwavering Care 2024-2028 Strategy highlights how no family has to endure their child's death alone.

Rami Okasha, chief executive officer of CHAS, said: "Three children a week die in Scotland from an incurable condition. Our strategic plan sets out how we will provide unwavering care to children who may die young and their families, at every step on this hardest of journeys.

“Over 135 families shared what is important to them about CHAS. We heard directly from 77 children and young people through stories, art and play.

“Families told us there are three critical stages where they need CHAS – when they learn their child is seriously ill and may die young, helping their child to live well and also help them to die well with ongoing bereavement support.

"Our strategic plan is centred on these critical stages and what we will do to build upon the exceptional work we already do in these areas."

East Kilbride tot Amelia McMillan was born in 2021, and was Ainslidh Stevenson and Jamie McMillan's second daughter.

She continued to hit all of her milestones but when she was six months old, Ainslidh noticed she started slumping and was losing coordination.

She would also scream hysterically and her body would go rigid.

After initial tests came back normal, Amelia was sent to Queen Elizabeth Hospital in Glasgow for an MRI.

Ainslidh 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.”

She said Amelia underwent more tests but her health quickly took a turn for the worse as her heart started to fail.

The doctors told the family to say their goodbyes.

She 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.

“We were so relieved, but then the consultant told us Amelia likely had Mitochondrial disease. He explained how it affects the part of every cell that creates energy.

"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.”

Ainslidh and Jamie eventually took Amelia home but they were given even more heartbreaking news just before Christmas in 2021.

She said: “They told us Amelia would not live to see her second birthday. I held Amelia and cried the whole day.

"We only took her to hospital a month ago and our whole world was being ripped apart. Olivia just wanted to be an amazing big sister. Seeing her help Amelia open presents on Christmas morning is a moment I’ll cherish forever.”

CHAS stepped in, inviting the family to Robin House, a purpose-built hospice facility in Balloch by Loch Lomond.

When doctors informed the family that Amelia's body was shutting down, they chose Robin House as her final resting place.

Ms Stevenson describes her daughter's goodbye at the hospice as "so peaceful."

Amelia died on July 29, 2022.

CHAS assisted the family in the aftermath of Amelia's death, offering emotional support and helping the family make funeral arrangements.

Ms Stevenson said: "Coping with the death of our baby and explaining to Olivia why her sister can’t come home would’ve been impossible without CHAS.”

She said the family is honoured to be a part of the fundraising appeal in Amelia’s memory to help encourage more people to donate to help the charity help more families like theirs.