Elsa Mayor was born in June 2014 and diagnosed with Spinal Muscular Atrophy (SMA) Type One when she was just eight-months-old. She passed away at Bluebell Wood earlier this year.
Genetic testing and long spells in hospital led to Elsa being diagnosed with SMA Type One, a neuromuscular condition which affects movement. Type One is the most severe and children affected rarely live past their second birthday; at present there is no cure.
Elsa’s mum and dad, Charlotte and Gareth, were told her overall development would be slow, and her chances of ever walking or communicating were very low. Getting any kind of bug or cold could really set her back, and seriously damage her lungs. After a long time in hospital, the family spent Mother’s Day at home, but then Elsa deteriorated and was rushed back to hospital. It was then that they were told the devastating news that she wouldn’t recover.
Charlotte said: “We came to Bluebell Wood for some support before we returned home with Elsa. We had a wonderful weekend; we could invite family and friends – it was a lot easier than being at home. While Elsa had been in hospital we had very little chance to hold her, change her nappies or feed her, but we were able to do that at Bluebell Wood. We had her christened at Bluebell Wood and her four-year-old sister Olivia, held a candle.
“Just as we were due to go home after that weekend, Elsa became too poorly to move. We just knew within ourselves that it was cruel for her to carry on.”
The family had some time with Elsa on her oxygen before it was removed. Everyone got to say their goodbyes, including Olivia. Grandparents were also by little Elsa’s side.
Gareth added: “After she passed away, the Bluebell Wood team were amazing. We knew nothing about what to do, and the staff helped and suggested things. I carried her to the Primrose End of Life suite, and we could go in and visit her whenever we wanted. Every time we went to see her she was just as beautiful as ever.
“The care team made casts of her feet and prints of her fingerprints. We are so grateful that we have those. Bluebell Wood help us so much; Olivia has playwork counselling, which is important as she does get very upset sometimes.”
Gareth and Charlotte have shared their story to explain how much the generosity and support of community members means to the children and families we care for.
Gareth added: “Elsa lit up our lives. You can light up other children’s lives here by donating to this appeal. Please make sure that this fantastic place, run by fantastic people, keeps going.
“For a family like ours that have a child who passed away, it’s a support system that you wouldn’t get anywhere else. Not everyone may have, or know a child who comes here, but you can still help.”