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A former competitive swimmer has been struck with a debilitating illness and is pinning hopes on life-changing surgery in Germany to recover her health.
Alice Williams, 19, has been battling a rare condition for the past two years - abdominal vascular compressions - that causes her extreme pain when eating and drinking.
Williams said digesting even small amounts of water can cause pain as well as sitting, standing and walking.
She also has POTS (postural orthostatic tachycardia syndrome) that causes dizziness and fainting spells if she exerts too much energy.
Alice Williams will be heading to Germany in March for up to four weeks.
According to the University of Maryland Medical Centre, vascular compression syndromes are a group of conditions that occur when a person’s blood vessels are under abnormal pressure, restricting the size of the blood vessel and the amount of blood that flows through it.
In Williams’ case, these compressions are in the abdominal area.
After being diagnosed last year, she had already lost double her initial weight down to 28kg and now relies on a feeding tube for nutrition.
The surgery date is confirmed for March 12 and she will spend up to four weeks in a specialised clinic.
Williams said she was relieved that the surgery had been confirmed after months of contacting the clinic and fundraising towards the $150,000 medical treatment costs for the overseas trip.
“Getting this diagnosis was such a relief as it meant I finally understood what was happening in my body and why I was feeling this way.
“But it was also scary as the treatment is surgery and is not currently available in New Zealand so Germany is the only real option at this point.”
Her father, Jason Williams, said the family were feeling a “bit frightened” and nervous because it would be a major surgery for her.
“It is an open abdominal surgery, so it’s not keyhole surgery or anything. It’s a pretty massive operation.
The once-competitive swimmer will be sticking to recreational swimming once recovered.
Williams said she is looking forward to her life returning to normal and hopes she can experience the same things people her age do.
“I really hope to in the future be able to do sport, swim and exercise again, to be able to eat again, do teenager things and also attend uni. I just want my life back.”
Parker was diagnosed last year after four years of deteriorating health.
Oscar Parker was diagnosed by German doctor Wilhelm Sandmann after his family found a Facebook group and got in contact with other families.
Oscar’s oldest sister Cushla Parker said 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,”
He is currently fundraising for surgery in Germany as well.
