Playground for miracle Craigieburn man
Published: March 24, 2008 | 6945th good news item since 2003
AFTER four years in darkness, afraid to venture outside, life for Craigieburn teenager Sammy-Joe Liistro is about to change.
The 19-year-old, who suffers from a rare, life-threatening genetic disorder called trichothiodystrophy, will be able to play outside for the first time in four years.
His condition means he is sensitive to light; ultra-violet rays attack his DNA.
Sammy-Joe’s mum Maria Liistro has received news that developer Delfin plans to build a UV-free playground for him in their back yard.
“It’s going to be another world for him,” Mrs Liistro said.
“The last four years he has been practically living in two rooms, only venturing out for 15 to 20 minutes at night.”
The life-changing equipment, worth more than $150,000, will be a pergola-like structure, with rubber floor and shutters that can be opened at night.There are also plans for a therapeutic spa.
“It means people can come and visit, and other children who are in Sammy-Joe’s boat can come and interact with him,” she said.
“Sammy-Joe hasn’t had much social interaction for the last four years. This is going to change everything.”
Mrs Liistro, who also runs a support group for parents and families with children who suffer from similar conditions to Sammy-Joe, said the structure would mean meetings could be held at their house.
Two years ago Sammy-Joe had a stroke, leaving him without the ability to chew or swallow. Mrs Liistro said that, because he had lived under the “rules of the condition, he had regained his ability to eat independently”.
“The doctors in America call him the ‘miracle boy’. They keep sending me little FedEx boxes to collect his DNA,” she said.
“The playground will mean Sammy-Joe can continue to live under the rules.”
Delfin Craigieburn project manager Tom Trevaskis said Delfin was proud to be involved in such a life-changing project.
“It would not have been possible without the time and effort provided by our construction partner Naturform, and we can’t wait to see Sammy-Joe enjoying playtime in a place he can call his own,” he said.
“To date, we have received support and funding from companies including Boral, Winslow Constructors and Clayton Utz, which really proves the impact this young boy has had on the community.”