When teenagers talk about going to the theatre on their birthday, they usually mean the cinema.
Not Hannah Capil.
The Invercargill teen spent her 13th birthday in a hospital theatre, braving yet another surgical procedure.
That was almost a year ago. Now, as Hannah curls up in an armchair sporting a trendy haircut and a friendly smile, it’s hard to notice she’s not a normal, healthy teen.
It’s the small tube winding in through her nose, a tube attached to a sunshine-yellow pole covered in soft toys, that hints at the reality.
Hannah has a rare immune deficiency.
It’s a deficiency so uncommon that doctors have told the family Hannah is the only person in New Zealand, and probably Australasia, diagnosed with it.
She has to be hooked up to her nasogastric feeding tube 24/7, and still uses a wheelchair when she leaves the house.
Primary immune deficiencies can be imagined almost like a tree. Every deficiency is a different branch, with Hannah out on a tiny twig all on her own.
In the United States, people have a slightly different take. There, young people with deficiences are known as zebras – they may all have stripes but all their stripes are different.
Hannah’s stripes first appeared four years ago, when her mum, Lisa Capil, took her to the doctor with a cough.
Back then, all Hannah had was a cough but, when her condition began to deteriorate, with no clear diagnosis in sight, Capil became worried.
“She just got sicker and sicker. I was like, ‘there’s something wrong with our daughter’.”
A visit to a private paediatrician and a CT scan eventually returned a horrifying diagnosis: cancer.
Things moved quickly from there.
The family flew to Christchurch the next day, and the medical journey began.
However, in an almost unprecedented move, the doctors “undiagnosed” her cancer.
Hannah returned home with a new diagnosis, equally as scary: a primary immune deficiency.
The teenager has now been tube-fed for more than three years, and the deficiency has caused problems with almost every part of her body, including her lungs, stomach, spleen and liver.
The diagnosis also meant Hannah has had to undergo dozens of surgeries, Capil says.
“Hannah was counting her surgeries, but she lost count.”
The most important surgery, perhaps, has been her bone marrow transplant.
It’s a serious, but lifesaving, procedure.
Hannah and her parents spent a 262-day stretch in Starship Hospital as the young Southlander battled through the surgery and started on the path to recovery.
For Capil, the transplant has shown her how strong her young daughter really is.
“It was very touch and go . . . The doctors and nurses said she’s made of armour.”
Credit must also go to Hannah’s younger sister, Emma.
When it was discovered Emma’s cells were, miraculously, a match for those Hannah needed, the younger sister became the donor for her bone marrow transplant.
The rest of the family – Hannah’s older brother Cameron, 18, and her dad, Alastair – have also been deeply affected by the ordeal.
Christmas was spent at the hospital, in Hannah’s room, and Alastair had to take a lot of time off work to support his ill daughter.
The family were reunited in Southland in April, after Hannah was finally allowed to return home.
Apart from some “niggling issues” and her regular hospital visits, the 13-year-old is on track to being an ordinary teenager.
She hopes to head back to lessons at Southland Girls’ High School part-time next year, but until then will continue learning at home through the Southern Health School.
And, despite all she’s been through, the teenager has decided it’s time to give back.
She’s chosen to help the Immune Deficiencies Foundation of New Zealand, an organisation that has provided a lot of support through her journey – popping in with gifts, organising flights for her siblings to visit, and just being there for the family.
She has launched a fundraising campaign with a typical teenage sense of mischief, called throw a Pie for PI (primary immune deficiency).
The campaign, devised overseas, is similar to the viral ice bucket challenge.
Those nominated must take a cream pie in the face or pay a forfeit donation to the foundation.
The cream pie drive is just a bit of fun to help a good cause and raise awareness, her mother says.
She has already taken a pie in the face from Hannah, as have several friends and family members.
The aim is to raise a few thousand dollars for the charity.
Until then, Hannah is taking time to look after the family’s pet lamb, Candy.
The rest of the family have their eyes on Hannah, helping her take the baby steps to recovery.
“You’ve just got to go with the flow – we’re just taking each day as it comes,” Capil says.
“We’re just thankful she’s alive.”
To take part in Throw a Pie for PI, head to idfnz.org.nz/news/
– The Southland Times