Ehlers-Danlos Syndrome: Family fundraising to get urgent overseas surgery for sick teen [Video]

The longer her blood vessels are compressed, the more her organs are damaged, Puetz explained.

Julia’s health deteriorated suddenly and unexpectedly in March 2023. The last time she ate solid food was a year ago and she now relies on a nasal tube for nutrition and hydration.

She suffers from vomiting, pain and other “horrific symptoms”, Puetz said.

Puetz and her husband have four children and Julia’s condition has had a huge effect on their family.

“Every time we go to the ED, my other kids are worried that we might not be coming home for weeks.”

The family has started a Givealittle page to raise $140,000 for Julia to have highly specialised surgery in Germany.

“It’s very daunting because it’s such an astronomical sum,” Puetz said.

However, since the page was started last night she has been “blown away” by people’s willingness to help.

Puetz hoped Julia would be able to have the surgery by the end of this year if enough money could be raised in time.

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