The family of a young Christchurch man with a debilitating, rare abdominal syndrome are desperately fundraising for a life-saving operation in Germany.
Oscar Parker, once a thriving musician, singer, and rep hockey player at St Bede’s College in Christchurch, now faces a life-threatening challenge.
Four years ago, his health took a downturn, leaving him with debilitating symptoms and a mystery illness.
Fast forward to December 2023, 21-year-old Oscar finally has answers – a confirmed diagnosis of abdominal vascular compression syndrome (AVCS), an exceedingly rare disease, especially in males.
Oscar was diagnosed with the rare syndrome by German Doctor Wilhelm Sandmann after his family found a Facebook group and got in contact with other families going through similar situations.
According to the University of Maryland, the rare syndrome occurs when a person’s blood vessels are under abnormal pressure, limiting the size of the blood vessel and the amount of blood that flows through it.
The lack of blood flow can make a person feel weak and cause extreme pain.
New Zealand lacks treatment options for AVCS, so the main option for the Parker family has to raise $120,000 to complete surgery in Germany.
Sandmann is recognised as one of the few in the world capable of performing the life-saving surgery Oscar desperately needs.
Oscar’s oldest sister Cushla Parker told the Herald that he grapples with excruciating abdominal pain, relentless fatigue, disrupted sleep, nausea, malnourishment, and a restricted diet, limiting him to just four foods and water every day.
“He’s been described as being a great listener, always wanting to help but ever since he’s had this illness, he’s been unable to do the things that he loves and enjoys essentially because his symptoms prevent him from doing that,” she said.
Oscar’s health struggles have taken a toll on his education and career, preventing him from finishing high school, pursuing further studies, or maintaining employment.
“So his symptoms prevent him from being a typical, 21-year-old, essentially, he’s just pretty much at home all the time,” Cushla said.
She told the Herald the surgery alone is expected to cost around $95,000, with additional costs on top of that.
“The reason why the price fluctuates is that the average stay in, in the Germany hospital, post-surgery is about two weeks, but some people end up staying for three weeks,” Cushla said.
“You need to be in the car anywhere from four to six weeks in Germany for post-op appointments, additional imaging and things like that.
“There’s the accommodation, the travel but also, support person going with Oscar, that also means that they’re not, working for that period as well so, loss of income.”
Expensive medical bills are common for the Parker family as Oscar was diagnosed with Type 1 Diabetes at the age of 13 months.
Oscar’s father also has type one diabetes, as well as his other brother, who also lives with Down Syndrome.
“We have a lot of medical consumables that already aren’t funded on top of his surgery needing which is quite a lot,” Cushla said.
A Givealittle page, set up has been set up by Cushla to fund the surgery and has so far reached $23,095.
Despite his battles, Oscar aspires to contribute to healthcare and help others facing similar challenges.
People wanting to donate to the Givealittle fund can donate here.