By: Caters


Isabel before SJS diagnosis. Photo / Caters

A young girl was left fighting for her life after suffering an extremely rare, horrific allergic reaction following a vaccination.

Isabel Olesen, from Melbourne, developed painful sores all over her body 48 hours after undergoing a routine immunisation and later went blind.

Her mother, Edwina, 39, later discovered she had Stevens Johnson Syndrome (SJS) – a rare and life-threatening allergic reaction to medication or an infection.

DermNet New Zealand states that SJS is: “A very rare, acute, serious, and potentially fatal skin reaction in which there is sheet-like skin and mucosal loss. Using current definitions, it is nearly always caused by medications.”

There are approximately seven cases reported per million individuals.

While her daughter pulled through SJS, Isabel was left with life-changing side effects.

She lost the majority of her sight, and needed to learn to walk, eat and talk all over again.

Isabel recovering in hospital. Photo / Caters

Edwina, a self employed product designer, said: “I’d never seen anything like it, Isabel’s skin was red raw, when I moved her head the skin from her eyebrows and cheek would fall into my hands.

“The smell of burning flesh was stuck to my hands for weeks, it was so traumatising to see her so unwell.

“While in hospital we were called by nurses who warned that she might not make it through.

“I was terrified and my heart was racing so fast that I could have passed out on the way to the hospital.

Against the odds, Isabel is now riding a bike, enjoying her second grade at school and has taken part in three triathlons.

“SJS is such an awful disease but I’d never heard of it until Isabel was diagnosed,” Edwina said.

“It wasn’t until I saw images online that I realised what we had ahead of us.

Isabel learning to walk again. Photo / Caters

“I was heartbroken but we took every day as it came and after three months Isabel was allowed home.

“She was barely recognisable and needed to learn everything all over again.

“Her eyes were the main concern and after recovering she was registered as blind.

“She needs regular eye drops every day and had a cornea transplant in one eye so she could at least see some colours and movement.

“We’re so proud of her now, Isabel has done three triathlons, rides a bike and rollerblades.

“She’s a little miracle and we’re so lucky she survived.”

Edwina first noticed there was something wrong with her daughter when Isabel’s skin became hot to touch.

She added: “It was a hot summer day so when Isabel started complaining that she [was] thirsty and her skin felt hot to touch, I wasn’t concerned.

Isabel now. Photo / Caters

“But early the following morning I noticed red spots began to from across her skin, I rushed to hospital.

“What happened from there was a complete nightmare. She was 18 months old and suddenly her life hung in the balance, it was heartbreaking.”

Edwina said her daughter had spent years recovering.

“She now realises she’s different and will often ask, ‘why do I have to be blind?”‘ she said.

“It’s hard to hear but we always tell her how lucky she is.”

However, Isabel has adapted to life with limited eyesight and is now learning braille at school.

Edwina is now hoping Isabel’s story will raise awareness for SJS.

“Isabel suffered an extremely bad reaction but every survivor is left with life changing affects.

Isabel running in a triathlon. Photo / Caters

“SJS breaks down the membranes around the eyes and causes them to become extremely dry.

“Despite this, Isabel uses eye drops every day and wears protective glasses to ensure she doesn’t damage her eyesight any further.

“To see her running triathlons now is incredible, she always has someone with her so she knows where she’s going and she can’t wait to do even more in the future.”

Source: NZ Herald



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