A dying boy’s legacy may save the lives of other children.
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When 19-year-old Ben Ellis died from lymphoma last September at Armidale Public Hospital, he left $10,000 in his will to thank the hospital for the care it had shown him since childhood.
“He was a lovely human being,” his foster father Tony Bush said; “such a pity to see him go so young.”
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Tony, formerly principal at Glen Innes West Infants’ School, his wife Jeanette, and their own children had fostered Ben and his elder sister Emma at their Ben Lomond property for nine years.
Ben was one of only five people in the world with ataxia-telangiectasia (Louis-Bar syndrome) Fresno variant, a rare neurodegenerative genetic disease.
The condition damages the immune system, and causes intellectual impairment. Ben had a mental age of four, and weighed only 18kg for the last couple of years of his life.
“The hospital itself did a great job for Ben, taking care of him,” Tony said. “They always put him way up there first, and the care they gave him was the ultimate. I don’t think you could have wished for any better.”
Ben would come to the hospital to receive a blood cell transfusion every month. Every Thursday, he would see his play therapist Debbie.
"It was a family thing almost at the hospital here,” Tony said. “The nurses on the kids’ ward all knew him, and even when he was on his death-bed, they were all there. I think they were all as cut up as we were at the end of it all, and most of them turned up at the funeral as well, which was really touching.”
The money will go towards betterment of the paediatric unit, specialised equipment, and patient comfort.
“Armidale Paediatric Unit is extremely grateful for such a generous donation,” maternity and paediatric unit manager Cherie Hunter said. “It will allow us to continue to provide a high level of care for our children and young people in the community.”
The money comes from Ben’s fortnightly Department of Veterans’ Affairs allowance, which accumulated to about $50,000. Ben also left $10,000 to children’s family cancer charity Camp Quality,