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

A Wellington teenager who loved competitive cheerleading, violin and debating is no longer able to eat or drink and urgently needs surgery that’s not available in New Zealand.

“It’s absolutely heartbreaking,” Babette Puetz said of her daughter’s condition.

“There’s nothing worse than seeing your child suffer like this and if only I could, I would take all her problems upon myself and just have her happy again.”

Julia, 15, has multiple abdominal vascular compression syndromes (AVCS) and hypermobile Ehlers-Danlos Syndrome (EDS) - a rare connective tissue disorder.

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.

Julia is still doing some schoolwork, although unable to attend school, with her favourite subjects being maths and science.

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.

It was tough for Julia, a sporty and energetic teenager, to have her body failing her but she remained resilient, Puetz said.

“I find it really amazing how she’s still making the best of every day and trying to be positive.”

She is still doing some schoolwork, although unable to attend school, with her favourite subjects being maths and science.

Julia joins other Kiwis like Bay of Plenty mother Pam Coburn who likened the pain of swallowing food or liquid to “swallowing a gobstopper with knives that’s hot” as she prepared to travel to Germany for the same surgery.

Hamilton teenager Kai Hay cannot eat, drink or work and said she “desperately” needed the surgery but was struggling to raise money.

Julia suffers from vomiting, pain and other 'horrific symptoms'.

A Herald investigation in 2018 revealed four women’s difficulties having their EDS diagnosed.

Three of them- Georgie Ferris, Dr Rachel Palmer and Stephanie Aston - died last year and had struggled to get their illness recognised.

Radio host Reverend Frank Ritchie recently also fundraised and took on significant debt for his 17-year-old daughter to be treated in Germany for her debilitating EDS- a process that he estimated cost a staggering $200,000.

There was a silver lining to every story, Puetz said, and they had met some amazing people who were dealing with similar problems.

One of those people is teenager Jemima Thompson who had the surgery in Germany last year.

“I went from just lying in bed to being able to go back to dance, to hang out with friends, to do everything that I was doing before I got sick”, she said.

What are AVCS and EDS?

Common characteristics of EDS include joints that move more than normal, unusually stretchy skin and fragile tissue with wounds that take longer to heal.

Vascular compression syndromes are a group of conditions occurring when blood vessels are under abnormal pressure, restricting blood flow, which can make a person feel weak and cause extreme pain.

Georgina Campbell is a Wellington-based reporter who has a particular interest in local government, transport, and seismic issues. She joined the Herald in 2019 after working as a broadcast journalist.