Family bonds overcome challenges
The Townsends of Te Aroha could be anyone’s family.
They speak in a language typical of families. Listen to their conversations and you’ll hear nicknames, humour, and shared experiences that give rise to welltraced stories.
Their tidy house in the shadow of Te Aroha Mountain is framed by gardens, terracotta pots, and a lawn that looks like it’s been cut with kitchen scissors.
Inside, an assortment of knick-knackery fill rooms, each their own clue to lives seeded and celebrated.
Portraits of Lloyd and Patricia Townsend’s four children hang on the lounge wall, arranged in the timehonoured tradition of oldest to youngest: Kyle, Brett, Sharyn and Joanne.
The photos, taken years apart, show the siblings aged two years and three months.
Some five decades on, and all but Joanne still live at home.
The family’s lounge is affectionately known as ‘‘Sharyn’s room’’, a space she’s furnished with her own television and radio.
She prefers different telly programmes to the rest of the family, they say.
At age nine, Sharyn’s feet began to twist, the first expressions of an inherited neurological disorder.
Over the decades, the condition slowly robbed her body of movement.
Kyle, the oldest, was the first to show symptoms of the disease, then Brett.
Joanne has been unaffected by the disease.
Patricia remembers taking Kyle to an orthopaedic surgeon after he developed difficulties walking.
The doctor diagnosed Kyle as having flat feet and dismissed Patricia as an overanxious mother.
But Kyle’s problems continued and eventually he was referred to a paediatrician who identified it as familial spastic paraplegia - a rare neurological disorder.
Today, Kyle, Brett and Sharyn, all aged in their 50s, are confined to electric wheelchairs.
The disease hasn’t impacted the siblings’ cognitive functioning, but has affected their speech. Brett and Sharyn now rely on a text-to-speech device to communicate.
Spend time with the Townsends, however, and you soon realise the family has mastered the art of body language.
A gentle head nod from Sharyn, or subtle smile from Brett, can convey more than what many people can say in a sentence.
To appreciate how far the disease has progressed since the Townsends were first diagnosed, one just needs to flip through the family’s photo albums amassed over five decades.
One photo shows Brett at Te Aroha College in 1974 completing the school cross country with the aid of crutches.
Other photos show Kyle standing proudly next to a 1952 Fordson Truck he found under a hedge and restored to mint condition.
Kyle was the first to be diagnosed with familial spastic paraplegia, but the last to be confined to a wheelchair, something Lloyd and Patricia put down to their oldest son’s fierce determination.
When the family lived on their 120-acre farm at Manawaru, 16 kilometres south of Te Aroha, Kyle’s mechanical skills proved invaluable.
His handiwork included building a mobile calf feeder, a drain cleaner, and a manure top dresser.
Kyle and his siblings were the fifth generation born on the Townsend farm.
Lloyd and Patricia hoped their children would one day take over the farm, but their disabilities made that impossible.
By the time the family moved to Te Aroha, Kyle, Brett and Sharyn were all in wheelchairs.
Lloyd says doctors have gone through his and Patricia’s family trees, searching for signs of the disease in previous generations.
‘‘I come from a big family but there’s no trace of it anywhere. It’s annoying because we still don’t know where the disease came from,’’ he says.
‘‘All we know is the kids’ lives would have been completely different if they didn’t have it.’’
The siblings have developed strong friendships with others over the years but nothing that’s led to romance.
Patricia says the best explanation given to her of her children’s condition was that Lloyd and her genes weren’t compatible. A simple expression of fate. But the story of the Townsends isn’t one framed by loss or limited by disability.
Theirs is a tale of resilience, triumph, and of what can be achieved when a family refuses to bow to circumstance.
The Townsends shifted to their purpose-built house in Te Aroha 17 years ago as Patricia and Lloyd entered their retirement years.
The house, which sits on a 10-acre block, features extra wide doors and passageways to accommodate wheelchairs.
Lloyd, who turns 80 this year, is blind in his right eye and has about 30 per cent vision in the other.
Patricia has also had her share of health scares.
In May last year she underwent a six-hour operation to remove a benign brain tumour.
She’s also a brittle diabetic and has to inject herself six times a day to control her blood glucose levels. Seventeen years ago she received a quadruple bypass.
Despite their growing health challenges, keeping the family together has been Lloyd and Patricia’s priority.
But it’s also meant accepting help from others, namely Waikato DHB’s Disability Support Link and Hauraki health provider Te Korowai Hauora o Hauraki.
Every weekday morning, two helpers arrive at the house about 7am to help shower and dress Brett and Sharyn.
Lloyd and Patricia see to Kyle.
In the evening, two helpers return for a couple of hours to help get the siblings ready for bed.
Helpers also come to the house on weekends.
Doctors say there’s no way to slow or stop the siblings’ degenerative disease although a new exercise and stretching regime has proved beneficial.
The exercises include getting them to lower and raise themselves in a hoist.
Recently, the family took to Kyle’s manicured lawn to play a game of football with a giant oversized ball.
Helpers pushed the siblings around the lawn. Even Patricia got involved.
Medical research into the condition gives the family hope that one day a cure or remedy can be found.
But for now, the Townsends of Te Aroha continue to embrace life, together.
‘‘People often say that the first thing they notice when they come here is that everyone smiles,’’ Patricia says.
‘‘That’s important to us.’’
The Townsend family, from left, Brett, Lloyd, Patricia, Sharyn and Kyle.