A family who adopted four disabled children is raising money for a memorial garden after the loss of their ‘hurricane of sunshine’ daughter.
Parents Tina and David Hillier have been grieving the death of daughter Rosie, and then faced a court case involving a carer’s treatment of another disabled daughter, Eve, 21.
Rosie was born with the genetic condition Cornelia De Lange syndrome. It has numerous symptoms including delayed development, kidney, heart, respiratory, visual and epilepsy issues.
She died in December at Pilgrim Hospital in Boston after catching a cold which led to sepsis then multiple organ failure.
“She was like a load of monkeys rolled up into a tiny little thing,” Tina says of Rosie. “She was very mischievous and fun.
“She was also very loving to those she knew would love her back.
“She was very aware when people were not happy too. I remember at church once there was a service for someone whose husband had been killed in a road traffic crash and she just got up and went up to the widow and held her hand for a good 20 minutes throughout it.”
Rosie is one of four children adopted by the couple.
They also have Jonathan, 34, who has Down’s Syndrome and heart defects.
He was given a three per cent chance of surviving surgery but a deteriorating quality of life for six months without. He survived with flying colours.
Eve was told she’d only live for six years after being diagnosed with Leighs Encephalopathy at the age of three, but turns 21 in November.
Another son Luke died in 1990 the day before his fourth birthday, eight months after Tina and David adopted him.
Adopting was something they had decided to do after initially failing to conceive.
Tina and David did go on to have Joshua, 28, who is blind due to a genetic condition.
He is studying at university in Chester and he has a sister Christine, 25, who still lives near the family home.
She regularly helps out alongside a team of 11 carers who look after the rest of the family, including Tina who now struggles to walk unaided.
“Christina and Rosie were attached at the hip; totally inseparable,” said Tina. “Jonathan too keeps asking when Rosie’s coming back. Every big occasion, such as birthdays, he’s still asking if she’ll be back for it.”
Christine drew around where Rosie lay her hand on her arm during her last moments and has now had the outline tattooed.
“We all miss Rosie incredibly and she has left a huge hole in our world,” she said. “She brought so much joy to our family and everybody she met.
“Jonathan and Eve are struggling to come to terms with losing Rosie. This will help them to come to terms with losing our dear sister.”
The memorial garden they’d like to create in her memory includes plans for a bench to be built by David as well as water features and bushes which Rosie used to like to run her hands through.
The Go Fund Me page is available at https://www.gofundme.com/f/rosie-joy-hillier
Tina described the last few months as ‘terrible’ due to the loss of Rosie and court action against a former carer.
