Devastated parents relive the unthinkable moment they were told their baby boy may have just weeks to live after he was born with incredibly rare 'butterfly' condition
- Lachlan was born in April 2020 with recessive dystrophic epidermolysis bullosa
- The incurable condition means that Lachlan's skin is prone to blistering
- The condition can also be fatal, with many not expected to live past age of 35
- His mother, Jess Brass, has revealed her heartbreaking at Lachlan's diagnosis
Parents of an eight-week-old baby were left devastated when their eight-week-old baby was diagnosed with a crippling skin condition.
Jess Brass and her partner Andrew Collins were thrilled when their second child, Lachlan, was born in April.
Ms Brass, from Caboolture, 50km north of Brisbane, said it was a similar pregnancy to her first but as soon as Lachlan was born she knew something wasn't right.
'We discovered his condition just after he was born as we noticed one of his feet had minimal skin on it,' Ms Brass told Daily Mail Australia.
'He then went into special care and they had him on oxygen and quickly covered his wound.'
Lachlan Collins (pictured) was diagnosed with the incredibly rare skin disorder recessive dystrophic epidermolysis bullosa
Lachlan's mother Jess Brass (pictured) said she and her partner Andrew Collins have been left devastated by the news
But Ms Brass knew something wasn't right when bandages, needles and the oxygen mask damaged Lachlan's skin further.
The newborn was transferred to Mater Hospital Brisbane, where medics quickly diagnosed him with recessive dystrophic epidermolysis bullosa.
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Children with the disorder are sometimes referred to as 'butterfly children' as their skin is said to be as delicate as wings.
'We were extremely heartbroken to know our son was going to have this as a lifelong condition, which is extremely painful,' Ms Brass said.
She said that Lachlan was in so much pain that he has to be injected with morphine just so he can have a bath.
'My partner and I are really struggling to come to terms with all of this devastating news.
'It has been heartbreaking knowing that it could be fatal and many children do not live past an early age,' she said.
Lachlan's condition causes him so much pain that he has to take morphine just to take a bath
'It has affected us on a daily basis but I'm lucky to have so much love and support from family and friends.
'We are really concerned about the road ahead not knowing what the outcome is going to be for him.'
Ms Brass said there is no telling whether there will be a cure available in her son's life time.
It's motivated her to raise awareness of his condition.
She said her other son, Riley, who is two, is too young to understand what is going on but often points to his brother's wounds out of curiosity.
He has been pulled out of daycare and the couple have had to halt their cleaning business while they figure out how to care for Lachlan.
'We want to spend as much time as possible with him not knowing what lies ahead for him,' she said.
The couple's family have set up a fundraiser in order to help ease the financial burden placed upon them.
So far it has raised $6,483.
'Our beautiful family has put this fundraiser together for Lachlan and us as a family to take away some of the financial burden and we are forever grateful especially from all the donations,' Ms Brass said.
The fundraiser can be found here.
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