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Home / New Zealand

Ehlers-Danlos Syndrome: Sick teen booked for overseas surgery after fundraising effort

Georgina Campbell
By Georgina Campbell
Senior Multimedia Journalist·NZ Herald·
6 Aug, 2024 05:00 PM4 mins to read

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In today's headlines with Susie Nordqvist, Kamala Harris has selected her running mate, and pathologist says it's likely Lachie Jones drowned. Video / NZ Herald / Getty

A Wellington teenager who cannot eat or drink and hasn’t been to school in 16 months has a chance of getting her life back.

About $95,000 has been raised through Givealittle in five weeks for Julia Choquette to have specialist surgery in Germany that’s unavailable in New Zealand. In addition, $31,500 was recently raised by Julia’s school, Queen Margaret College, allowing her family to book the surgery for October.

Wellington teenager Julia Choquette, 15, has abdominal vascular compression syndromes and hypermobile Ehlers-Danlos Syndrome.
Wellington teenager Julia Choquette, 15, has abdominal vascular compression syndromes and hypermobile Ehlers-Danlos Syndrome.

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

“Finally we have some hope again because we tried everything in New Zealand and we ran out of options”, Julia’s mum Babette Puetz told the Herald.

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Before she became ill, Julia was an active and fun-loving student involved in competitive cheerleading, tumbling, violin, debating and mentoring.

These activities, once central to her identity, were sidelined by her condition.

Julia’s health deteriorated suddenly and unexpectedly in March 2023. The last time she ate solid food was more than a year ago and she now relies on a nasal tube for nutrition and hydration. She suffers from vomiting, pain and other “horrific symptoms”.

Before she became ill, Julia Choquette was an active and fun-loving student.
Before she became ill, Julia Choquette was an active and fun-loving student.

The Herald reported in June that Julia’s family had started a Givealittle page to raise $140,000 to pay for the overseas surgery.

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The family has now reduced their goal to $108,500 after Queen Margaret College’s large contribution.

“The [school] fundraiser looked like a day of great fun and the fundraising means so much to Julia and our family as it shows her that, even though she has been away from school for 16 months now, her friends and teachers have not forgotten her and are all behind her”, the family posted in an update on the Givealittle page.

Queen Margaret College launched the “Generous for Julia” campaign in the final week of Term 2.

Julia’s mum Babette Putez accepting Queen Margaret College’s fundraising from Head Prefect Charlotte-Jane Mears, left, and Deputy Prefect Divya Srinivasa.
Julia’s mum Babette Putez accepting Queen Margaret College’s fundraising from Head Prefect Charlotte-Jane Mears, left, and Deputy Prefect Divya Srinivasa.

The effort included a raffle, a student-led Foodie Fundraiser with candy floss, baked goods and hotdogs, and a non-uniform day.

Principal Jayne-Ann Young said the response was remarkable.

“The efforts of our students, staff, whānau, alumni and members of our wider college community have made a tangible difference in Julia’s journey toward recovery.

“The date of the surgery and presentation of funds was announced at our first school assembly in Term 3, and it absolutely reaffirmed the power of community in times of adversity. We wish the Choquette family safe travels, and we hope to see Julia quickly recovered and back in our classrooms at QMC soon.”

Students have made videos, cards and artwork for Julia with messages of support, Young said.

The school has also facilitated Julia’s love of learning with tailored education options from teachers. This has been important for Julia.

“It’s a very lonely and isolating experience to be sick and away from school and friends for such a long time”, Puetz said.

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The Queen Margaret College fundraising effort included a raffle, a student-led Foodie Fundraiser with candy floss, baked goods and hotdogs, and a non-uniform day.
The Queen Margaret College fundraising effort included a raffle, a student-led Foodie Fundraiser with candy floss, baked goods and hotdogs, and a non-uniform day.

Julia’s family was grateful to finally have the chance to do the surgery after previously not knowing whether they could afford it and what they would have done in that scenario, Puetz said.

“It’s amazing and scary at the same time”, she said.

Amazing because of the support and generosity people have shown whether it’s from friends, strangers, businesses or kids donating their pocket money.

Scary because the surgery is a significant operation that will take a year to recover from.

The family has had a telehealth appointment with the surgeon in Germany which Puetz said has helped put their minds at ease.

Julia, her younger sister Louisa, and Puetz will travel to Germany in September. Julia’s dad will stay in New Zealand with her two brothers.

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Puetz hopes they can raise the remaining $13,000 to cover total costs before then.

The family will be reunited by the end of November to begin Julia’s long recovery.

Puetz hopes her daughter will be able to eat a slice of cake for her birthday next year.

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.

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