She was literally one in a million. But Eilidh Anderson didn’t need a rare diagnosis to single her out.
She charmed everyone she met, had a smile that would light up a room and, with Joy as a middle name, was on a mission to spread it every day of her short life.
Last week brought another birthday on the calendar the youngster will never see, nearly two years after she lost her battle with a rare genetic condition. But there was still be cake and celebration – and a bank of marvellous memories to mark the milestone.
Mum Pamela said: “I remember when Eilidh was diagnosed thinking it was going to be a bumpy ride but we were going to experience joy like no other. And we certainly did. She brought joy in life and continues to do so after death. She was a gift. And the memories keep her alive.”
Eilidh was just six when she died in April 2019, three years after being diagnosed with Joubert Senior Loken syndrome. The genetic condition, which hampers neurological development, affects just one in every million people. Aged four, Eilidh was diagnosed with stage-three kidney disease, an associated condition, which soon became terminal.
“There were no signs initially,” said Pamela, 46. “When Eilidh was born she was the most perfect baby. She was like a dream.”
But as their second child got older, Pamela and husband Walter, also parents to Archie, now 10, realised she wasn’t meeting her milestones.
“She wasn’t sitting up, wasn’t reaching out for things, and we started to think something maybe wasn’t quite right,” said Pamela. “For years, doctors said they knew Eilidh had a difficulty but they just couldn’t pinpoint what was causing it. It wasn’t until she was three that Eilidh was eventually diagnosed.
“But it didn’t really matter because we already knew Eilidh would take her own path. We had had so many years of just living in the now and just giving her all the support she needed in the moment. It was just confirmation that would continue.”
Kidney function is affected by the condition – and it was clear from the early days that Eilidh’s was declining rapidly.
“When it reached terminal stage in August 2018, we were told she had between six weeks and six months to live,” said Pamela. “But we were lucky enough to get eight months with her before she passed away.”
And it was eight months of wellness. “Despite her diagnosis, she wasn’t a ‘sick’ child,” said Pamela. “She loved swimming and going to her clubs. She only spent 20 or so nights at hospital throughout her short life. Eilidh was at nursery until 10 days before she died and full of life right up until the end.”
But the family, from Edinburgh, did have to spend those months having heart-breaking conversations about funerals, about what to do if Eilidh died in the night, about what to do after she died.
“We knew at that stage we didn’t want her to die in hospital. It was our wish that Eilidh be treated at home as much as possible,” said Pamela, a classroom assistant.
And that wish was fulfilled thanks to Edinburgh Children’s Hospital Charity.
In the months before Eilidh passed away, the organisation arranged for the family to create some happy memories with activity sessions at home, led by palliative care nurses. It provided a way to hold some difficult conversations but, while covered in glitter and paint and glue, in the most fun and relaxed way possible.
“I have so many lovely memories of our family taking part in these activities together,” said Pamela.
“We painted, felted, made 3D pictures, made hand casts, made blankets and created Christmas tree decorations.
“We loved the mess Eilidh would make with the paint, her trying to eat the dried pasta, the way her face would light up when she recognised Ruth from palliative care and her bag of fun when she came to see us. We talked about some pretty tough things, but when you are covered in paint, it doesn’t feel so sad.”
Thanks to the sessions, the family has a shelf filled with the treasures Eilidh created.
“I like to see things she has touched,” said Pamela. “I often touch them too, tracing where her fingers have been. It gives me immense comfort remembering how she embraced these experiences and the joy they brought to us.
“The sessions themselves were just as important as the fun and the keepsakes as they helped the care team get to know Eilidh and our family.
“The team behind all those lovely activities, who had seen us laugh and smile now became the people we needed to lean on to help guide us through the most difficult and sad stage of Eilidh’s illness.
“We wanted Eilidh to have a good life, but also a good death – and live her best life right up until her last breath. They knew what our wishes were and helped us make that happen. And we trusted them fully because they knew our girl and they knew us – not just from reading a file but because they spent time with us, fun times where we had made memories together.”
Pamela, Walter and Archie’s last day with Eilidh was almost two years ago, on Easter Sunday 2019.
“I knew there were only a couple of hours left,” said Pamela. “The sun was out, she played on the trampoline with her brother, and we sang songs to her.
“She loved ladybirds – and that day there were ladybirds everywhere. She was peaceful and calm. I tucked her into bed and she drifted off in her sleep.
“There was no death trauma, there were no regrets. It sounds strange, but for me it was an amazing experience.
“It is tragic that my daughter died – losing a child is one of the biggest tragedies a parent can have – but it was handled in the best possible way.
“Almost two years on, the grief still takes me to dark places, but I come back to my memory of that day, and it brings me a great deal of comfort.
“If I could go back, I would choose the same six years with Eilidh. I would live the life she lived again and again. She lived her best life and had the good death she deserved.
“We have all struggled with the loss, at different times. I was a wreck for the first six months, Archie started to unravel six months after Eilidh died and it hit Walter somewhere in between.
“We all have different times when we feel sad and, sometimes, it hits us hard when we least expect it – but we have helped each other.
“It’s important to remember that, while there is always sadness, there is also joy. Sometimes in the chaos of life we have to look for it, but the joy of Eilidh is there every day and in the memories we have created.”
The Andersons spent Tuesday, which would have been Eilidh’s 8th birthday, at Figgate Park in the east of the city, where they have adopted a tree in her memory, eating her favourite homemade strawberry and cream cake, and looking for ladybirds.
And just remembering.
“We’ve kept Eilidh alive. She’s still very much a part of the family and still there in everything that we do. We are very much still a family of four,” said Pamela.
“The charity sent us a family of knitted elephants. We put one in Eilidh’s coffin.
“The remaining three sit on her bed and – because elephants never forget – they will never forget they were once four.”
Wonderful work of nurses who create precious memories for bereaved families to treasure forever
Memory-making activities are just some of the ways your support for the Edinburgh Childrens’ Hospital Charity helps children and families in hospital and in the community.
From funding medical research and world-class hospital equipment, to parent accommodation, family hardship funding and the hospital play programme, every donation helps to make positive change.
Victoria Buchanan, deputy director of fundraising at ECHC, said: “For children at high risk and approaching end of life, memory-making activities are hugely important in providing comfort to them and to their families.
“Funding of the service, made possible by ECHC supporters, means families have time to enjoy shared activities together, have space to have difficult conversations over paint and glue, and have special keepsakes to remember their child through bereavement. The palliative care team do a wonderful job of supporting bereaved families to create precious and lasting memories with their child.
“We are privileged to support them and would like to say an enormous thank you to everyone who donates to ECHC to make this possible.”
To donate, visit echcharity.org
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