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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.
- 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.
“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.