Nasie Bayley, seen with mum Melissa, says it is difficult to see the light at the end of the tunnel following years in and out of hospital. Photo / John Stone
Nasie Bayley, seen with mum Melissa, says it is difficult to see the light at the end of the tunnel following years in and out of hospital. Photo / John Stone
Much of Nasie Bayley's 19 years have been spent fighting for her life, against a condition so rare she is the only known sufferer in the world.
The Hukerenui woman said she is losing her spark for life and is now reaching out for help - with the financial strainof living on a benefit putting more pressure on her and her mother, Melissa, who cares for her full-time.
Nasie has an enlarged spleen which is growing, caused by high blood pressure in her portal vein, originating from a blood clot which partially closed it. This all stemmed from her congenital condition, a vascular malformation which means veins grow throughout her digestive system. The veins squash her internal organs, causing pain and internal bleeding.
With the next major surgery set down for April 13, Nasie said it does not really feel like there's light at the end of the tunnel.
"I don't really go anywhere now," Nasie said. "I kind of lost all my friends when I left school at 15."
Nasie may need to be in a medically induced coma following the surgery, which will attempt to remove the last of the malformation.
"We're scared sh**less, excuse my French," Melissa said. "There's been a lot of tears and a lot of 'oh my God are we doing the right thing?'."
Nasie: "I don't really go anywhere now. I kind of lost all my friends when I left school at 15."
Despite publishing a yoga guide, achieving highly in the classes she has been well enough to complete, and working towards finishing a book, Nasie said she feels like a burden. Her benefit - which gave her the same amount as an unemployed jobseeker - was enough to "exist, but not live".
Melissa said this was frustrating as Nasie needed a special diet and had to travel to Auckland three or four times a month for hospital appointments.
"My view is it costs more for a sick person to live anyway," Melissa said. "You still get the same amount of paperwork sent for you, you still have to go in for an appointment to prove your case. Every few months you have to go and get another medical certificate even though it's a condition that's going to be with Nasie her whole life."
The official name for Nasie's condition was "Rectosigmoid Congenital Lymphovascular Malformation and Cortical Venous Hypertension with Varices and Hypersplenism". Correcting it had been as complicated as the name sounded.
In 2012 Nasie nearly died when she haemorrhaged following surgery. She spent six months in hospital with her surgeons travelling overseas to seek answers about her condition. Surgery was a monthly event throughout 2013. Then, in 2015 her health deteriorated again and it was discovered the problem was once again worsening.
Nasie's quiet will to get better shows through when she talks about her hopes for the future. She would like to get a degree in sport science, qualify as a yoga teacher and finish writing a book documenting her journey. Nasie had set up a crowd-funding campaign to help with her living costs, travel and future plans.
