Eilidh's Story

For children at high risk and those approaching end of life, memory making activities are hugely important in providing comfort to them and their families. Your donations make these possible.

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. 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 was not a “sick” child. She had only spent 20 odd nights in hospital throughout her short life. It was our wish that Eilidh be treated remotely as much as possible – a wish that was made possible by the palliative care team.”

In 2018, Eilidh’s kidney disease became terminal and she died peacefully at home on 22 April 2019.

Our beautiful girl charmed everyone she met; her obvious joyful spirit transcended any developmental limitations. She taught us all so much.

- Pamela, Eilidh's mum

“In the months before her death, we took part in memory making activities, funded by ECHC. 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 have a shelf filled with the treasures Eilidh created. I like to see things she has touched.
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 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. They helped to guide us through the most difficult and sad stage of Eilidh’s illness. 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 also 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.”

Your donations fund special memory making activities and items to support and bring comfort to families in hospital and in the community. Find out more about how your support helps families like Pamela and Eilidh to make precious memories.