When Sarah Morrell was just six, the sweet girl wrote a few heartfelt words in her treasured Bratz notepad. “I am free, I am me,” she wrote. “I am a girl who will try as hard as I can to touch the top of the world.”
Sarah didn’t know it at the time, but her poignant words would become a mantra for the rest of her life. “My parents encouraged me to give everything a go,” tells Sarah, 21. “And if I couldn’t do it one way, I’d just figure out another way of doing it.”
Fifteen years on from penning her childhood poem, Sarah’s father Ben Morrell, 57, still keeps the tattered piece of paper in his wallet. “It sums up Sarah,” he smiles. “Our family focuses on what we have and not what we don’t have.”
Sarah has Morquio syndrome, a genetic disorder that affects about one in every million people. It means her body can’t produce an enzyme that’s needed to remove toxins from cells. Because of it, Sarah is only one metre tall and has been in a wheelchair since age 10. The disorder affects her growth, joints and breathing – but not her intellect or zest for life.
“When I was little, I thought everyone was different in some special way,” remembers Sarah, a nonstop talker with an infectious giggle. Last year, Sarah had major spinal surgery in Auckland. Due to respiratory complications during her recovery, she spent four months in intensive care, with a tracheotomy breathing device fitted in her throat.
“Can you believe it? I couldn’t talk for four months,” laughs Sarah. She has now returned to her business studies at UCOL in Whanganui. “I’m all good – 2016 is the year of me.” Ben and wife Lynda, who also have a son, Tim, 23, thought Sarah was the perfect addition to their family when she arrived into the world.
“She was our perfect, bonny little lass,” smiles Ben. But when Sarah was six months old, a Plunket nurse noticed a curve in her spine.
“We couldn’t see it,” admits Ben. “We were blinded by love.” They took her to Whanganui Hospital where, as luck would have it, a paediatrician had just returned from a genetic convention in the UK. “He took one look at Sarah and said, ‘I think that’s Morquio syndrome,’” recalls Ben.
The Morrells were told there was no treatment and no cure. “Of course there was a grieving process,” says Ben. “It was devastating. We’d been told our gorgeous wee baby had an incurable disease.”
But Lynda remembers the paediatrician said something that would have a profound effect on how they would bring Sarah up.
“He said, ‘Take her home and focus on what she’s got – a good brain,’” tells Lynda. “I’m a problem solver. I thought, ‘Yep, I can work with that. Let’s look at the glass half full, not half empty.’”
By the time she was three, Sarah had a pigeon chest and her knees collapsed inward. As her mobility worsened, she used a trike and then a bike to get around at primary school.
“There’s always that one kid who’s a bully, but I had a lot of friends and many of them are still friends today,” says Sarah.
Ben adds, “In all these years, I don’t think I’ve ever heard Sarah ask, ‘Why me?’ She just gets on with life.”
At five, Sarah had her first surgery to fuse the odontoid joint, where her head connects to the neck. “I remember telling my friends I needed surgery to stop my head falling off,” she giggles.
At eight, she had surgery on her knees. At 12, she had her first operation to put metal rods in her back, but by then, she was already in a wheelchair.
“It didn’t hold me back much. I loved netball, but because I was too small to reach the hoop, my friends would link their arms and make a hoop,” she says.
In 2012, Sarah travelled to the US to participate in a ground-breaking drug trial for VIMIZIM, an enzyme replacement therapy. For 18 months, Sarah and her dad lived in San Francisco, and she attended Las Lomas High School in Walnut Creek. Lynda and Tim visited them over Christmas.
“It was an amazing experience,” says Sarah. “I was really lucky to be part of it.” The enzyme improved her joint pain and mobility, and a US pharmaceutical company funds her treatment here in New Zealand. “It’s not a cure – there isn’t one,” explains Sarah. “It keeps the symptoms at bay.”
Never one to complain, however, Sarah is getting on with life. She loves swimming and aims to get back in the pool before Christmas to regain the strength to walk upright in water. “In the pool, Sarah is a free spirit,” says her mum.
And in July, Sarah celebrated her 21st birthday with a party at home. “It was a full house – packed out,” she smiles.
And as a nod to the childhood poem she penned 15 years ago, her cake was in the shape of a globe, with a tiny model of Sarah at the top in her wheelchair.
“That’s me – Sarah Morrell, on top of the world!” she declares.