Holly’s story: “Her twin sister will always be missing her other half.”
This is Holly’s story, told by her mum Stevi…
“Holly required 24/7 care, she couldn’t do anything for herself. Due to twin-twin transfusion syndrome, she was deprived of oxygen at birth which left her with very complex needs.”
At 36 hours old Holly’s family were told that she was not breathing on her own and that her prognosis was very bleak: “But amazingly, when the life support machines were turned off, Holly lived. She fought every day to live.”
When she was two, she had her first seizure, and when she was three she had a gastric tube fitted. Her care was 24/7, she was double incontinent and her disabilities progressed as the years passed: “We spent so much time in our local hospital. They were like family. Sometimes, she had to be sedated because her pain was so bad.”
Holly loved the Frozen soundtrack, slime, and more than anything else, her sisters: “Despite everything, she had a great love for life.”
Just before the first Covid lockdown, Holly was discharged from hospital, but she soon developed intestinal failure. “It was very painful and we knew it wasn’t fixable. It was the beginning of the end for Holly.”
The family live in rural Scotland and were supported by their local community nursing team, ward staff and their paediatrician. Holly also spent some time at CHAS, the family’s most local hospice.
“We were constantly in and out of our local children’s ward, but we always knew we wanted her to be at home when she died.
The care we received was nothing less than phenomenal. They all went above and beyond to care for us.
“The hospital was always Holly’s happy place. We nominated one of her nurses and doctor for an award, because they meant so much to us.
“Near the end, the hospital team, community nursing team and CHAS worked together as one big team. A model they have since used for other families. We were delivering strong drugs through a syringe driver. But they were always there when we needed them. Always.”
Holly died at home in October 2020 at 9 years old.
The community nurse continued to visit the family after Holly died: “I feel passionate that other families should have the care we had. We didn’t need to fight for it thankfully. Nobody should have a child die, and nobody should have to fight for the care they deserve.”
“We always knew Holly would not make it to adulthood. But now her twin sister is missing her other half. They were born to be a duo. They were always supposed to have each other.”
Right now the support that children like Holly and their families are offered depends on where they live. This is unacceptable and the dad of another child Jaxson, Jim, is writing to Rishi Sunak to tell him that – if you’d like to show your support for children like Holly across the UK please add your name to Jim’s letter today.
