Fam­ily bonds over­come chal­lenges

Piako Post - - FRONT PAGE - AARON LEAMAN

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.’’

CHRISTEL YARDLEY/STUFF

The Townsend fam­ily, from left, Brett, Lloyd, Pa­tri­cia, Sharyn and Kyle.

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