BY GABRIELLE MCLEOD, SUNRAYSIA DAILY SEPT. 25, 2014, 4 A.M.
The Halfpenny family: Wayne with Jessika, 4, and Emma with Jakob, 8 months. The family has to regularly travel to Adelaide to get treatment for Jessika’s rare skin condition. Picture: Izabelle Falvo.
A simple hug from mum and dad can cause four-year-old Jessika’s skin to tear and turn into a painful blister.
Jessika Halfpenny, of Red Cliffs, is a “cotton wool baby”, one of two in the world with her specific form of the genetic skin blistering condition, Epidermolysis Bullosa.
She will spend the rest of her life in bandages, with the most minor scratch, bump or fall having the potential to be fatal.
For parents Wayne and Emma, caring for their little girl is a labour of love, and begins first thing in the morning when they check all her wounds before cleansing and draining blisters.
This can take more than two hours.
The condition also affects Jessika’s mucous membranes such as the moist lining of the mouth and digestive tract, creating blisters and severe scarring, which means she needs to be fed through a tube in her abdomen.
As if things couldn’t get any worse for the brave and happy little girl, she has also just started to show signs of muscular dystrophy, making it difficult to walk.
“She is just so fragile, she is fully dressed and bandaged 90 per cent of the time,” dad Wayne said.
“We have three refrigerated air conditioners in our house for when summer comes along – it really helps her.”
Jessika and her family regularly visit specialists in Adelaide for treatment where they stay at Ronald McDonald House.
The Halfpenny family is one of many Sunraysia residents who make use of RMH each year.
They are not alone – about 10 per cent of visitors to RMH are from Sunraysia.
Jessika was first fully diagnosed when she was two-and-a-half years olf and her family became regulars at the House.
“We’ve stayed there about 17 different times in the past four years, for periods from one day to one month,” Wayne said.
“Everyone at Ronald McDonald House is very helpful and it’s nice to meet with other families going through similar things to you.
A few times when she was first born we were staying in (hotel) accommodation, which is what we would have to do if it was not for this facility.”
He said the added stress and cost of find accommodation would make it unbearable for their family, after both he and his wife had to quit their jobs to care for their daughter.
The Ronald McDonald House Charity will hold its third annual Ride for Sick Kids SA on November 22, involving Mildura on its route for the first time.
The charity will hold a family fun day in the Langtree Mall with all funds going back to the facility that supports so many Sunraysia families each year.
Wayne said he and members of his “Utez n’ Vanz Car Club” will man the barbecue on the day.