FOR Daniel Jamieson, it’s the small things that make a difference to his day.He suffers from a rare condition, Hollow Visceral Myopathy, which means his gut goes to sleep sometimes, which sees him in hospital often for extended stays.
The day I visited the 10-year-old, it was a Nintendo 3DS handheld game, which he had borrowed overnight from the staff at the hospital, that made his day.
Daniel, along with his mother Joanne Bateman, had been at the hospital for a week and had no idea when they may be able to go home.
“One of the great things about this hospital is that the parents can stay in the same room overnight,” says Joanne. “The staff here make it very comfortable for parents so we can help tend to the needs of our kids as well.”
Joanne says Daniel’s condition affects the whole family. When Daniel is in hospital, Joanne stays with him while her husband Malcom Jamieson stays at home with their 11-year-old daughter Caitlin.
“It’s probably hardest on my husband because he does work, home, school, hospital,” she says. “It’s tough on Caitlin as well.”
Since he was born, Daniel has spent significant amounts of time in hospital with his visits generally lasting anywhere from five days to 11 weeks.
“I’ve lost track of how many times we’ve been here. We tend to know when he comes to hospital that we’re not just going to be home again in a couple of days.”
Daniel was born with the condition and it’s so rare that it took 11 months to diagnose.
“No one here had seen anything like it before so he was diagnosed at Westmead [Children’s Hospital in Sydney],” Joanne says.
“When his gut falls asleep, his whole system stops. He can’t eat enough nutritous food to grow. He has enormous amounts of vomit – there is a lot of vomit in our house!”
Joanne says she can’t praise the hospital enough for the services offered to Daniel.
“The play room is a wonderful thing for him and he gets a tutor which helps him catch up on school he’s missed. It’s made an amazing difference to his education.
“What we’re trying to do is give him a good education so that he’s got choices. He will be quite independent but if we can get a good education for him, that is the most important thing.
“The people here are really amazing people. Obviously they care for Daniel but they keep me sane as well. They can tell when things are getting too much.
“Daniel’s life has changed and our lives have changed because of the hospital.”
PaTCH (Pediatrics at the Canberra Hospital), consists of several clinical areas; a 40-bed inpatient ward including a separate adolescent area, a day stay/surgery unit, outpatient clinics and the administration and research areas.
PatCH (Paediatrics at the Canberra Hospital) is one of three charities benefiting from this year’s Majura Park $10,000 Charity Challenge. The other two are Sids and Kids ACT and Ronald McDonald House Canberra Building Appeal.
The challenge is supported with the “Big Book of Kids’ Savings”, which has been delivered into households in Canberra and Queanbeyan. It contains six weeks’ of coupon deals from stores at Majura Park, Canberra Airport, and a “donation slip”.
The charity with the most donation slips by Sunday, August 14, will receive a $5000 donation from Majura Park, with $3000 and $2000 donations for the other charities according to the number of donation slips submitted.
Donation slips can be placed in collection boxes at any participating store, including Toys”R”Us, Babies”R”Us, Lollipop’s Playland, Chemist Outlet, Trade Secret, 3 Seeds and McDonald’s Majura Park.
An additional donation slip is published in this week’s “CityNews”.