On any given day, little Heath Sutherland’s face is etched with joy – but as his mum Anna watches him giggle and play, her heart is always heavy with sorrow.
The three-year-old from Rotorua chatters non-stop as he chases his big brothers around the lawn in his custom-made chair, but inside his wee body an insidious disease is slowly sapping his ability to move, eat and breathe – and his devoted mother knows that nothing short of a miracle will save him.
“Heath’s mind is bright, but he’s literally stuck inside his own body,” says Anna sadly.
Nearly two years ago, Heath was diagnosed with spinal muscular atrophy (SMA), a degenerative disease that drains physical strength by affecting the motor nerve cells in the spinal cord. Cruelly, it means that almost every day, Anna, 29, and Jono Sutherland, 28, and their older sons Jayden, nine, and Roman, six, are witness to Heath’s gradual deterioration.
The giggly boy has never crawled and will possibly never walk. Although he once rolled over and could sit alone for a few moments, he no longer can.
More recently, he’s become so weak that if his head flops forward, he struggles to lift it back up. His mum tells, “Over the course of a day, we see him getting weaker. By dinner, Heath can barely pick up a sandwich. It’s heartbreaking to watch.”
At two, a virus landed Heath in ICU, fighting for life after his lung collapsed.
The progression of the disease means Heath will one day need machines to help him breathe and eat, but right now, the risk is that he can’t cough or clear his throat, meaning he could choke
on his own phlegm.
“My baby has been given a death sentence and there is nothing I can do to save him,” says Anna helplessly.
By the time Heath was four weeks old, his family began begging for help. “We would change his nappy and his feet moved, but never his legs – they were always floppy,” recalls dad Jono.
Over the following months, the couple took Heath to three different GPs to find someone who would listen. “They told me I was overtired, over- protective and that all babies develop at different rates,” tells Anna. “But I already had two children, so I knew something was wrong.”
Hooked up for a sleep study.
Desperate, Anna refused to leave the last GP without a referral, and the day before his first birthday, Heath was sent to hospital for an MRI and blood tests.
“At the time, we had no idea what they were looking for,” she explains. Weeks passed before the couple were recalled for a consultation.
“I remember a screen of blue writing,” shares Anna. “We were told Heath had SMA and did we have any questions? We had no idea what it meant, but we left the hospital with hope, convinced we just needed physio and that our little boy would be OK.”
Having fun with big brothers Roman (left) and Jayden is getting harder these days for Heath.
That night, the couple had friends over for dinner and Anna says she thought Jono looked like he’d been crying. He went to bed early and when she joined him later, he said quietly, ‘Google it.’
“I typed in Heath’s diagnosis and the first thing to appear on my screen was ‘SMA is the world’s leading genetic cause of infant death.’ I will never forget the feeling. I couldn’t breathe, my chest was caving in, everything just disappeared and I wanted to be sick.”
About 100 people in New Zealand have SMA and Anna belongs to a group that is collectively pushing the government, Pharmac and Medsafe for treatment to be more widely available. The only option, Spinraza, which has been described as one of the most expensive drugs in the world, is only given free of charge to patients under 18 if they have SMA type 1.
Because Heath could once sit unassisted, he isn’t deemed sick enough to qualify, but the fear is now that he will succumb to the disease before he gets the chance for treatment.
Parents Jono and Anna admit life has changed dramatically for the outdoorsy family, who’ve had to leave the farm to be closer to hospital.
For the Sutherland family, that only leaves one other option – to fund raise an eye-watering $660,000 for the first year of treatment.
They are raising money on Givealittle to fight for their son and the life they once had. “Everything we worked for has been stolen,” tells Anna. “Our dreams of watching our boys grow up, giving them a happy, normal, typical life – it’s gone.”
Before diagnosis, the young couple were working on a farm on the outskirts of Rotorua. “We loved the outdoors and would pack up the kids and go camping, to the beach, out walking,” reminisces Anna.
Since then, the doting mum has given up work to care for Heath, who needs to be watched 24/7 in case he chokes. Because even a common cold can be life- threatening, the family has moved into town to be closer to Rotorua Hospital.
The loving parents say access to Spinraza is Heath’s only chance, and they will never let go of the hope that their smiley boy will grow up and live an independent life.
Anna concludes, “Heath has been robbed of a typical childhood and we will continue to fight to try and claw that back for him.”
