Lisa Mullins dons her trainers to say thanks to Starship for helping Mikayla

Mother and daughter Mikayla and Lisa Mullins. Photo / Katee Shanks

Twelve-year-old Mikayla Mullins has spent almost all her life in and out of Starship Hospital - but her family consider themselves lucky as they get to go home after every visit. On October 20 Mikayla's mum gets to say thanks to the hospital for all it has done and continues to do. Reporter Katee Shanks speaks to the family.
There'll be no fancy footwork when Lisa Mullins takes on this year's Auckland Marathon.

Describing herself as a plodder as opposed to a winning contender, the Ōtakiri mother is taking on the 42km run with Team Starship as a way of saying thanks to the hospital for the love and care it has shown her 12-year-old daughter Mikayla.

Mikayla was diagnosed with neurofibromatosis (NF), a genetic disorder that causes tumours to grow all over the body, when she was five months old. Throughout the 12 years of her life, the youngster has been in and out of Starship with a plexiform neurofibroma.

"What was first diagnosed as a mosquito bite turned out to be a tumour on Mikayla's back, which then latched on to her spine," Mullins said. "She also developed scoliosis of the spine (curvature of the spine) which was surgically corrected after a 12-hour operation last year."

In August this year, Mikayla's tumour was "de-bulked" by surgeons.

Mikayla's tumour before and after surgery. Photos / supplied

"Following the surgery, Mikayla was a kilogram lighter which gives an indication of how big the tumour had become. Since then she has had another operation to remove excess skin left as a result of the de-bulking."

Mullins said the pain her daughter was in for the first two years of her life was horrendous.

"I can't say enough how grateful we are, and continue to be, to the team at Starship for the way they have treated Mikayla and our family. But I can try to help by fundraising for them."

The Auckland Marathon is Mullins' fourth, including the New York Marathon in 2012.

"After the New York Marathon I felt kind of flat but eventually, with the help of a running coach, got my mojo back and started running again."

Through the Everyday Hero programme, Mullins was given the task of raising $6000 before the marathon. To date, she has surpassed that figure with a week to go before she lines up at the start line.

"I've had some amazing sponsorship from family, friends and also local Whakatāne businesses who donated prizes for a fundraising quiz night held to raise money.

"Now I'm just counting down the days, I can't wait to take on the marathon."

And as with almost every running event her mother takes on, Mikayla will be at the finish line in support.

"If she's well enough she will run the last 100m with me," Mullins said. "At one event she was mistakenly given a medal at the finishing line and now jokingly expresses disappointment when they fail to hand her one."

Mullins said her daughter is an inspiration to the family.

"She never complains, not at all."

The titanium implants used to straighten Mikayla's spine. Photo / supplied

Recently Mikayla was told she would have to have another surgery. Instead of being upset, she turned to her parents, both of whom were upset, and told them not to worry.

"We were both fighting back tears," Mullins said.

"We had another moment only weeks ago when Mikayla got on a bike for the first time since having her back straightened. She hadn't been on a bike for about six years.

"I was holding the bike and she was telling me to let go. I reluctantly did and off she rode."

What is neurofibromatosis?
Neurofibromatosis (NF) is a genetic disorder that affects the bone, soft tissue, skin and nervous system. Clinical manifestations increase over time.

Plexiform neurofibromas present as bag-like masses within the skin. Nodular plexiform neurofibromas involve the dorsal nerve roots and diffuse plexiform neurofibromas are invasive tumours that may involve all layers of skin, muscle, bone and blood vessels.

- Source: DermNet NZ