A one in three million chance is what Nathan Burmesiter and his wife Lauren describe their two-year-old son’s rare genetic condition.
“We were going along with our business when we had Jake and had to completely readjust,” Nathan said.
The Yarraville family work closely with the 11 nurses working from their home everyday to help Jake go about his life.
Epidermolysis Bullosa (EB) is a genetic condition which causes extremely fragile skin.
Jake is what they call a butterfly child. The slightest friction can cause wounds akin to third degree burns.
“The full morning is always taken up by Jacob having to get dressings put on which protects him from daily life,” said Nathan.
“Everyone has several recessive genes and maybe more, if you meet somebody with that same recessive gene, this happens.”
Lauren and Nathan are desperate to help their son fight the disease and will do anything to help scientists find a cure.
“EB is so rare that many things are unknown, and doctors are often guessing,” she said.
“EB desperately needs a cure so children like Jake don’t have to live a life of pain from birth.”
On Sunday, March 24, the Burmesiter family invite the community to Williamstown Beach to ‘Plunge for Jacob’.
The plunge originated in the US for a little girl called Elodie who suffers from a similar condition to Jacob.
Nathan said the plunge is all about raising awareness of EB.
“Together with friends, family and the community in Melbourne, we are plunging into the ocean to raise money for EB,” he said.
“Every dollar spent on this plunge will go into research. Anyone that wants to contribute could quite literally change this kid’s life.
So far $19,700 has been raised. The goal is $30,000 goal which will help fund the the worldwide fight against EB.
Details: https://ebrpa-plunge.raisely.com/t/melbourne-2024
Jennifer Pittorino
