A charity has launched a new fundraiser to help support the parents of dying children.
Children’s Hospices Across Scotland (CHAS) has started the ‘Every Single Step Appeal’ to help families and make sure they never have to face the death of a child alone.
The charity says the new campaign will aid families straight from the moment of diagnosis, to helping the child live well through every stage of palliative care, and then by supporting them after a child’s death.
Rami Okasha, CEO 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.
“This plan was created after in-depth consultation with our families and key stakeholders including staff and volunteers. 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.
“These children and young people had used many different CHAS services, including hospices, care at home, family support, and joint CHAS / NHS teams in hospitals.”
As part of the ‘Every Single Step’ campaign, a bereaved family from East Kilbride has spoken about losing their daughter, and the support they received from CHAS.
Ainslidh Stevenson and Jamie McMillan welcomed their second daughter Amelia on 10 April 2021. They say she was a happy and settled baby who immediately bonded with her then two-year-old sister Olivia.
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Amelia hit all of her milestones, but when she was around six months old her parents noticed her slumping and losing coordination. Amelia later started to scream hysterically, and after an MRI scan at Glasgow’s QEUH severe changes in her brain were noticed.
Her mum, 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 gone 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 us to say our goodbyes. 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 and her family went to live at Robin House with the support of CHAS, and was even taken home for a while. However, after her health deteriorated further and doctors delivered the news that her body was shutting down.
Ainslidh added: “They asked us where we would like Amelia to die. In that moment we knew we had to take her back to Robin House. 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.”
CHAS continued supporting the family after Amelia’s death, offering emotional support and helping the family make funeral arrangements. Now, their new campaign hopes to raise funds for the hospice.
Rami Okasha of CHAS added: “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.
“Over the next four years, we will concentrate our efforts where we can have the most impact. Our nurses, doctors, and family support specialists will work across hospices, children’s homes and hospitals, providing tailored care for families in the places that suit them.
"We will continue to work with our wide range of partners including the NHS, councils, hospices, charities, government and our dedicated volunteers.
“Together, Scotland can deliver world class care when needed most – through the tough days of diagnosis, throughout a child’s life, at end of life, and after a child dies. To do this effectively however we need the continued support of the generous Scottish public. Every donation made to our Every Single Step appeal will make a real difference to the children and families we support nationwide.”
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