‘Every single step’: new fundraiser to help parents of children in palliative care
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 from the moment of diagnosis, to helping the child live well through every stage of palliative care, as well as support 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.
Amelia hit all of her milestones, but when she was around six months old her parents noticed her slumping and losing coordination.
She 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 and her family went to live at Robin House with the support of CHAS, and was she even taken home for a while. However, after her health deteriorated further, doctors delivered the news that her body was shutting down.
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.