When Jessika Halfpenny was born in Mildura in 2010, she was a happy, healthy ‘normal’ baby. However, when the newborn soon developed blisters all over her body and had doctors puzzled.
Her mother Emma Halfpenny recalls the experience, telling 9Honey: “I was just in denial to start with – I thought it was an infection.” And while doctors suspected Epidermolysis Bullosa (or EB), it took two years to get the full diagnosis.
“When I found out she had EB and met other children with EB, you learn to accept it slowly,”
She noted of the condition where children’s skin constantly blisters and is so delicate, they are dubbed ‘Butterfly Children’.
The condition means Jessika’s whole body needs bandages, with constant seeping wounds requiring her to be cleaned and re-dressed at least twice a day.
“As a mother, your heart breaks. You see her in a lot of pain and you wish you could transfer that pain onto yourself, so she wouldn’t have to suffer.”
Emma and her husband Wayne have both had to give up work to care for Jessika full-time, with their now three-year-old son Jakob also helping out. The mum-of-two says her daughter, who is now 7, is at an age where she understands more about what is going on now and is also able to help.
But admits the early years, when Jessika was a toddler, were “really hard”.
“She was crying, she was in pain, she was pulling her dressings off constantly, it was really stressful,” Emma recalled.
And while her condition was only superficial so to speak, it delayed Jessika’s ability to crawl, walk and even talk.
“She had to have physio to help reach her milestones – she couldn’t crawl as the friction and pressure on her skin would cause blistering and burn like wounds. And she used a small walker to assist her with walking.”
With the blisters discovered inside her body, Jessika was unable to eat as normal and as a result of the muscles around her mouth not really moving, she had problems pronouncing words.
“She had to have speech therapy to teach her sign language and mouth muscle exercises,” Emma revealed.
Nowadays though, Jessika is quite the chatterbox but requires “a voice amplifier to help her be heard as her voice is quite hoarse due to the blistering and scarring internally”.
The internal EB has other consequences too, with Jessika finding it difficult to watch her family eat at dinnertime, when she can’t.
Instead, the youngster has to be fed a special formula via a mic-key button (or feeding tube). And while Jessika is now going to school, her condition means getting ready in the morning can take approximately an hour. This is followed by a three-hour process after school, which involves soaking the wounds in a bath with bleach.
Given there’s no cure for the condition, Emma says the support system has been vital and praises them as “really great, it’s like a second family.”
When Jessika goes for check-ups every three months, they catch up with another EB family in Adelaide. And the EB community is so tight-knit, that everyone does as much as they can to support each other and raise awareness for the cause.
That includes one Adelaide dad who has sold everything – including the family home – to fund a run part-way around the country, to Brisbane, raising money for EB research along the way.
Andrew Biszczak and wife Sonia sold all their assets to self-fund the run, after struggling to secure corporate sponsors for the run.
While their daughter Tiffany isn’t a Butterfly child, Andrew became close to another local family whose daughter died of EB 18-months ago and is now hoping to raise $1 million to help find a cure.
For more information on how you can help or donate, more details on the Million Dollar Run can be found here.