4-Year-Old EDSer is an Inspiration to Her Family

It is amazing how resilient young children can be despite their struggles with Ehlers-Danlos Syndrome.

Kaylee Kretschmer looks like a typical 4-year-old budding ballerina, but she’s a true fighter.

kaylee“She was born with Ehlers-Danlos-Syndrome, a little known rare genetic condition which means her limbs dislocate easily, she is prone to bruising and is constantly tired.

Her mum, Mandy, who also lives with the condition, is urging people to wear their favourite pair of jeans in support of Jeans for Genes day today to raise awareness of diseases like her daughter’s.

The little fighter is a real inspiration as doctors told her she would never be able to play sport, let alone twist and twirl like a ballerina.

Kaylee’s defied the odds and just started her first term of ballet under the watchful eye of mum.

Everyday she needs to wear special braces around her ankles to support her joints.

“They support and keep her ankles together so that they don’t pop out so that she can walk,” Ms Kretschmer said.

“If she doesn’t wear them, at night she wakes up in pain (and) she literally thrashes her limbs on to something hard to try and get rid of the pain – it’s really awful.”

While Kaylee is her only child who has been clinically diagnosed, Mandy’s four other children all have symptoms of EDS.

Ms Kretschmer, 42, who had to stop work because of the condition, said she will need a hip replacement in the next few years but refused to let it get the better of her and her family.

“We were initially told that she (Kaylee) wouldn’t be able to do impact sports of any description but I’m a very firm believer in that we’re not going to let it beat us,” she said.

“We really struggle in people taking us seriously because we look normal, they call it the silent person’s condition.”

As well as living with ongoing symptoms, Ms Kretschmer said her family often struggled to pay for the much needed treatment and equipment to ensure Kaylee and her sons get the best out of life.

The braces alone cost $600 every six months, which isn’t covered by the government.

“Her shoes cost $150 from Poland as I couldn’t find boots in Australia that fit over her braces,” Ms Kretschmer said.”

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