‘Butterfly’ baby’s horror diagnosis rocks young family
A GLASSHOUSE Mountains family is facing an uphill battle after their newborn son was diagnosed with a rare and debilitating skin condition with no cure in sight.
Lachlan Collins was born in April with no skin attached to his foot, as well as several blisters on his body.
His mother, Jessica Brass, said he was transferred from Caboolture Hospital to Brisbane's Mater Hospital for further testing with a skin specialist.
"They knew pretty much straight away what the condition was, but they just needed to know the severity," she said.
The family spent the next month driving back and forth from their hinterland home to Brisbane until specialists determined the parents could competently manage Lachlan's needs.
After being home with Lachlan for two weeks, he was diagnosed with recessive dystrophic epidermolysis bullosa (RDEB), a severe form of epidermolysis bullosa.
According to Queensland Health, epidermolysis bullosa is a rare genetic blistering disorder affecting the skin and internal organs, and is a lifelong condition that can't be cured.
Children with the disease are often referred to as the "butterfly children", as their skin can be as fragile as butterfly wings.
Ms Brass said she and her partner, Andrew Collins, were devastated to learn their son's diagnosis would severely affect his quality of life and could even be fatal.
She said Lachlan's skin was constantly blistered or torn from simple, everyday actions and had to be managed with specialised formula, pain relief and regular bandaging.
The now eight-week-old baby is almost constantly hurting and has to be given morphine at bath times due to the pain of having his dressings changed.
"It's hard enough with a newborn baby as it is, and then with all this on top and doing his daily dressings with his wounds. It's pretty full on," Ms Brass said.
His mother said the family would do everything they could do give him "the best life for however long he has".
"It's going to limit him with a lot of things in life, especially through the development stage of being a baby," she said.
"A lot of RDEB babies don't live even past one. You've just got to take it day by day."
On top of Lachlan's diagnosis, the couple have taken a huge financial blow from having to stop work for their cleaning business and put their eldest child, Riley, in daycare while they learn to cope with the new reality.
"We've had to stop the business … and there's not a hell of a lot of help at the moment that we can get for Lachlan. So it's been quite stressful financially," Ms Brass said.
A Facebook fundraiser set up to help them through the difficult time has raised almost $5000 since Saturday.
Ms Brass said they were extremely grateful to their loved ones and anyone who had donated for the support.
"We've got so many great family and friends trying to help, so it takes that little bit of an edge off," she said.
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