An Ayrshire mother whose 12-year-old daughter died following an aggressive brain tumour diagnosis is backing a major £20 million appeal to transform children’s hospice care across Scotland.
Jackie Dunlop, from Kilwinning, says the care her daughter Ava Nelson and their family received at Robin House children’s hospice brought comfort, dignity and precious moments of happiness during the most difficult period of their lives.
Ava died on April 16, 2024, aged just 12, after being diagnosed with a high-grade glioblastoma.
Now Jackie is supporting the Children’s Hospices Across Scotland (CHAS) More Than A Hospice Appeal, a three-year fundraising campaign which aims to raise £20 million as demand for the charity’s services reaches its highest level to date.
The appeal will help fund the rebuilding of Rachel House in Kinross, modernisation of Robin House in Balloch and an expansion of specialist care provided in family homes and hospitals across Scotland.
For Jackie, the importance of that support is deeply personal.
She describes the nurses and staff who cared for Ava as “real life angels”.
“I will never forget their kindness and care,” Jackie said. “They carried us through everything, before, during and even after we lost Ava.”
Ava’s diagnosis
Ava had been a healthy 10-year-old when she began suffering headaches, dizzy spells and problems with her balance in May 2022.
After initially being diagnosed with a viral infection, Jackie remained concerned and pushed for further investigation.
An MRI scan revealed severe pressure on Ava’s brain caused by a tumour and she underwent emergency surgery the following day.
Doctors were unable to remove the entire tumour because of its position and biopsy results later confirmed that Ava had a malignant high-grade glioblastoma.
Jackie said the diagnosis devastated Ava’s dad Roland Nelson, step-dad Eddie Renor and her siblings, but it was Ava herself who showed remarkable strength.
“When I told her, it was her who was the brave one,” Jackie recalled.
“She had a wee cry and then just said, ‘Right well, we will just need to deal with it.’”
Robin House became a home away from home
Shortly after Ava’s diagnosis, the family was offered a referral to CHAS and Robin House.
Jackie admits that initially the word “hospice” frightened her.
“When I first heard it, I thought, ‘Oh no, that’s not for us,’” she said. “But I agreed to visit and the moment I walked through the doors, everything changed.
“It was nothing like I imagined. It felt welcoming, peaceful. It just felt safe.”
Robin House soon became a home away from home for Ava, Jackie and Ava’s siblings Skye and Payton, now aged 18 and 10.
What began with short respite stays became an important part of family life.
For CHAS, children’s hospice care is about far more than end-of-life support. Its hospices provide opportunities for children to play, swim, create artwork, make friends and celebrate special occasions while parents and siblings receive the support they need.
For Ava, that meant being able to enjoy life and retain her personality and independence despite her illness.
“The staff went above and beyond for my wee warrior,” Jackie said. “Nothing was ever too much. They didn’t just care for Ava, they cared for all of us.”
The hospice helped create experiences and memories for the family, including a trip to the Kelpies and arranging for Ava to try a zip slide.
Jackie remembers her daughter making herself very much at home at Robin House.
“She loved having the freedom of the place,” she said. “She’d wander about, causing havoc, chatting to everyone. She had such a sense of humour, always laughing and joking with the staff.”
One of the greatest things Robin House gave Jackie was the opportunity to stop being her daughter’s carer for a while and simply be her mum.
“I didn’t have to be Ava’s nurse anymore,” she said.
“I could hand over her care and just sit with her, cuddle her, laugh with her. That’s something I’ll always be grateful for.”
Ava’s key worker Pamela also became a major source of support for the family.
“She was incredible,” Jackie said. “Day or night, she was always there, checking in, giving us reassurance, giving us hugs when we needed them most.”
‘We knew we wanted to be at Robin House’
As Ava’s condition deteriorated, Jackie and the family knew where they wanted her to receive end-of-life care.
“We knew we wanted to be at Robin House,” she said. “It was where Ava felt happiest, and where we felt supported.”
Ava died on April 16, 2024, surrounded by her family.
“Watching my beautiful girl slip away was one of the hardest things I’ve ever had to do in my entire life, but the staff made sure she was as comfortable as she could be,” Jackie said.
“She was so well looked after. That gives me so much peace.”
Following Ava’s death, the family was able to spend time with her in Robin House’s Rainbow Room, a dedicated space allowing families to be with their child after they have died.
“That time meant everything,” Jackie said. “We weren’t rushed. We could just be with her, say goodbye in our own way.”
The hospice’s support continued after Ava’s death, with chaplain Amanda helping Jackie with arrangements and conducting Ava’s funeral.
“It meant so much to have someone there who knew Ava,” Jackie said. “She wasn’t just a name, she was truly known and loved.”
Family now giving something back
Jackie has since raised money for CHAS, including taking part in two Kiltwalks, and is now encouraging people across Ayrshire and Scotland to support the charity’s £20 million campaign.
“I just wanted to give something back,” she said.
“Robin House gave us so much, comfort, support, memories we’ll treasure forever. They helped us through the darkest time in our lives.
“I would encourage others to support their More Than A Hospice Appeal to help other families like ours and further improve palliative care across Scotland.”
Remembering her daughter, Jackie said: “Ava was bright and beautiful, inside and out. She faced everything with such bravery, not once did she complain.
“She showed us all how to live and her story, bravery and personality touched so many lives.
“Those she met in hospital were always amazed at how she dealt with all that came her way with a smile on her face. Ava will always be an inspiration to us all.”
Demand for CHAS care reaches record level
CHAS says the £20 million appeal comes at a crucial time for children’s palliative care in Scotland.
Last year, the charity supported 540 babies, children and young people through its hospices and community and hospital services, alongside 1,800 individual family members, the highest number in its history.
Over the past four years, the number of families accessing CHAS support has increased by 17%, while stays at its hospices have risen by 45% in three years.
In Ayrshire, the charity recorded 39 CHAS at Home visits and 40 admissions to Robin House.
CHAS says three children die from an incurable condition every week in Scotland, while advances in treatment mean more children with life-shortening conditions are living longer, often with increasingly complex medical needs.
The More Than A Hospice Appeal aims to respond to that changing demand.
As well as modernising Robin House, CHAS plans to rebuild Rachel House in Kinross with new therapeutic, sensory and wellbeing facilities, including a large purpose-built hydrotherapy pool.
The charity also wants to increase the amount of care provided in family homes and expand specialist support within hospitals across Scotland.
CHAS Chief Executive Rami Okasha said: “Every week in Scotland, families hear news that will change their lives forever. They learn their child has a condition that will shorten their life, and from that moment they begin a journey no family should have to face alone.
“CHAS is there from diagnosis onwards, helping families navigate the unimaginable. We provide expert care, practical support, respite, therapy and, when the time comes, end-of-life care and bereavement support.”
He added that children’s hospice care was changing as more children with life-shortening conditions live longer.
“Our hospices are filled with laughter, music, creativity and family moments,” he said. “They are places of living, not just dying. That is why this appeal is called More Than A Hospice.
“With the support of the Scottish public, we can transform children’s hospice care for future generations and ensure families like Ava’s have access to the care they need, wherever they live in Scotland.”
Donations to the CHAS More Than A Hospice Appeal can be made through the charity’s website.