Making Memories

In April 2019, age 6, Eilidh died at home. In the months before, like many other families in the care of the hospital palliative care team, she and her family benefitted from your support. Thank you.

Here, Eilidh's mum Pamela, tells us about her special girl: "Our daughter Eilidh was born with Jouberts Senior Loken Syndrome - a genetic condition that effects 1 in  1 million. It affected her neurological development and, at age 4, she was also diagnosed with stage 3 kidney disease, an associated condition.

"Despite her diagnosis, Eilidh as not a "sick" child. She had only spent 20 odds nights at the Sick Kids throughout her short life. It was our wish that Eilidh be treated remotely from the hospital as much as possible - a wish that was made possible by the palliative care team.

"Our beautiful girl charmed everyone she met; her obvious joyful spirit transcended any developmental limitations. She taught us all so much. In 2018, Eilidh's kidney disease because terminal and she died peacefully at home on 22 April 2019.

"In the months before her death, we took part in memory making activities, funded by Edinburgh Children's Hospital Charity. I have so many lovely memories of our family taking part in these activities together. We painted, felted, made 3D pictures, made hand casts, blanket making 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.

"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. They knew what our wishes were and helped us make that happen. All those difficult conversations we had over paint and glue came to fruition, but we were prepared as best we could have been.

"Thanks to the charity, we received a family of four knitted elephants. They spent time with Eilidh after she died and we put one in her coffin with her. The remaining three elephants sit on her bed at home and because elephants never forget, these three will never forget they were once four." - Pamela, Eilidh's mum

Every year, your donations fund special memory making activities and items to support and bring comfort to families in hospital and in the community. Thanks to your kindness, 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.

If you are in a position to do so, please consider clicking here to make a donation today. Your support could help families create precious and lasting memories with their child. Thank you.