OUR BOY IS SLIPPING AWAY
Therace tosaveJames
Theseparents desperately needanswers
The Christmas before last, James Swan was racing around the house at 100 miles an hour with his big brothers Marcus and Oliver. But since then, a cruel disorder has forced the wee boy to become a spectator from his mother’s lap.
Although James’ mind is nimble, a mysterious illness is slowly robbing the four-year-old of his ability to walk, talk and eat on his own. His hands lie fisted, his distorted legs are in splints and on a good day, he can crawl a few metres across the carpet like a big baby.
For James’ parents, Nicola and Graeme Swan, the heartbreaking deterioration in his motor skills is even more painful because their bright and loving little boy knows it’s happening but he doesn’t understand why. “He says to me, ‘My legs are so silly. When can we go to the leg shop and get new legs?’” tells Nicola, 36.
Despite 18 months of exhaustive tests and a global search for answers, Nicola and Graeme, 37, still have no diagnosis for their precious son. “Our James is a mystery man,” says his mum quietly.
All the doctors know is that something – they are not quite sure what – is causing cerebellar atrophy, which means the part of the brain that controls James’ balance, coordination and movement is shrinking, and
his nerve fibres are failing him. The danger now is that James can’t control his temperature, regulate his heartbeat or control his tongue, which could easily block his throat.
Instead of looking forward to the milestone of their youngest son starting school with his brothers in November, the Wellington parents are being forced to make heartbreaking decisions about his end-of-life care. “Doctors have told us to take him home and keep him comfortable – there is nothing more they can do,” says his devoted mum.
Wobblywalk
Eighteen months ago, James was a nonstop little boy who loved doing ballet and tap dancing with his brother Oliver. “James didn’t have a medical record, apart from his vaccinations,” recalls Nicola, an early childhood teacher who has given up work to care for her youngest son. “We’ve gone from that to a child whose medical file is so thick, it’s in three folders.”
The first inkling something was wrong was when James began to tire and asked to be picked up. He struggled walking up stairs and often resorted to crawling. A teacher at kindergarten one day asked Nicola if she’d noticed him wobbling when he walked.
Although the first GP assured them everything was OK, they sought a second opinion.
“That doctor, who was our regular GP, said, ‘Pack a bag and get to hospital.’” From there, James underwent a merry-goround of tests at Wellington Hospital – blood tests, genetic tests, nerve stimulation tests, urine tests, muscle biopsy, lumbar puncture and eventually, an MRI on his brain. The most obvious diagnosis of debilitating Duchenne muscular dystrophy – a progressive muscular weakness that typically affects boys – was ruled out.
“With each negative result, there would be relief, but without diagnosis, we didn’t have treatment options,” explains Nicola.
It’surgent!
James’ paediatric neurologist has put him on two drug trials, but nothing has slowed the creeping paralysis on his little body. In the past six months in particular, Nicola and Graeme have watched James deteriorate before their eyes – he’s now in a wheelchair most of the time, tube-fed through a Mic-Key button and struggling with debilitating fatigue.
“It’s a race against time for answers – and time is
something James doesn’t have.”
Yet despite everything life throws at him, James is a smiley, affectionate boy who’s an integral part of a busy household. Nicola is his fulltime caregiver, with help from the Swans’ dedicated support group of extended family and friends. For James, life is a whirl of appointments, from physiotherapy to occupational, swimming and speech therapy. Nicola survives on three hours’ sleep a night because James wakes in pain and wants his mum to massage his legs.
Desperate to connect with someone else in the world with the same condition, Nicola is often online until the wee hours. “My doctors think I am hardhearted because I don’t cry in front of them. I can’t let James see me like that – but at night, when I’m alone, I let it out.”
On top of all their stress, the family is down to one income and misses out on resources because they don’t
have a diagnosis. “We don’t come under Cancer Kids, or cerebral palsy or any umbrella,” tells Nicola.
Through their Givealittle site (listed under help4jamesswan), they have fundraised for a mobility van, as well as timber for ramps and a deck.
Earlier this year, a bright light was winning the Colgate Little Smiles competition. The whole family was treated to a two-week trip to the Gold Coast, visiting Sea World, Movie World and Wet & Wild, an experience Nicola says was “a dream come true”.
For the Swans, the future now lies with spending precious time with their son and the continued search for answers to what is slowly sapping the life from him.
“The only thing I know for certain is that we can’t give up on James,” says Nicola. “How can we give up on James when he is fighting so hard for his life?”