Tod­dler fights odds


Southern Gazette (Victoria Park) - - Front Page - Aaron Cor­lett­mu­ni­ d474111

AN East Vic­to­ria Park fam­ily is look­ing for help to send their youngest son to Syd­ney for in­ten­sive ther­apy.

Nate Shaffer (2) was di­ag­nosed with tri­somy 18 when he was in his mother Sa­man­tha’s womb.

He was given only a 10 per cent chance of be­ing born, but now he is in the world, his fam­ily are cel­e­brat­ing each day with him. It is be­lieved he is the only sur­viv­ing child in WA with the con­di­tion.

Mrs Shaffer said the fam­ily wanted to give Nate the best op­por­tu­nity to reach his full po­ten­tial.

“The sit­u­a­tion has taken its toll on our fam­ily; we are still un­sure how long we have with him or what the fu­ture holds for him, so that’s scary,” she said.

“Tri­somy 18 is just one of those flukes of na­ture. It hap­pens at con­cep­tion but there’s no rea­son for it.

“The doc­tors know about as much as us in terms of how long he will live.”

SA­MAN­THA and Leon Shaffer value every day they have with their son Nate.

The East Vic­to­ria Park res­i­dent (2) is liv­ing with the rare dis­ease Tri­somy 18 and is be­lieved to be the only sur­viv­ing per­son in WA liv­ing with the con­di­tion.

It means he has three chro­mo­some 18s which have caused de­vel­op­men­tal and in­tel­lec­tual de­lays.

Mrs Shaffer said dur­ing a 12-week scan the doc­tors found there was a high risk of Tri­somy 18 and at the 16-week mark it was con­firmed.

“The doc­tors told us the con­di­tion was in­com­pat­i­ble with life and they gave us the op­tion to ter­mi­nate the preg­nancy but we couldn’t do that,” she said.

Mrs Shaffer said even though Nate was given a 10 per cent chance of sur­viv­ing, they wanted to get him a chance.

“We de­cided to let Nate write his own story and we cel­e­brated each week of preg­nancy and now we cel­e­brate each week that he is with us,” she said.

“The doc­tors were quite scep­ti­cal when he was first born; they didn’t believe he was go­ing to be with us for a long time but by three months we all ac­cepted he would be with us for a while.”

Mrs Shaffer said among the is­sues Nate deals with is his car­dio­vas­cu­lar sys­tem, or­thopaedic is­sues with his hip and an in­abil­ity to swal­low, so he needed to be fed by a tube.

“He strug­gles to use his own body and to keep up his own head be­cause he doesn’t have much core strength, but in the past six months he has been able sit up by him­self, al­though he can’t walk or crawl,” she said.

“The global de­vel­op­men­tal de­lays mean he is more like a six-month-old baby; he can do oohs and ahhs but he can’t speak any words.

“He does phys­io­ther­apy, oc­cu­pa­tional ther­apy and speech ther­apy. It’s quite ex­pen­sive – one physio ses­sion costs $175.”

The Shafffer fam­ily want to send Nate to the Neu­ro­log­i­cal and Phys­i­cal Abil­i­ta­tion (NAPA) Cen­tre in Syd­ney next year, where he would do more in­tense phys­io­ther­apy.

“We know peo­ple who have been to the NAPA Cen­tre and had ex­cel­lent re­sults. It in­volves in­ten­sive ther­apy to meet goals and mile­stones sooner than you would nor­mally ex­pect,” Mrs Shafer said.

“Rather than one 45-minute ses­sion a week, there are ses­sions every day for three weeks. The NAPA Cen­tre orig­i­nates from Cal­i­for­nia but they had a pop-up in Mel­bourne and now they are hold­ing a pop-up in Perth, but they only had 13 places and 300 ap­pli­cants.

“We are fourth on the wait­ing list, so you don't know if some­one might pull out. But in the mean­time, we are plan­ning to go Syd­ney in March.

“It will cost $10,000, so it's not cheap.”

To help the Shaffer fam­ily, visit­nate-to-napa.

The fam­ily will hold a fundraiser at Read­ing Cinemas Bel­mont.

More de­tails will be an­nounced on www.cel­e­brat­ing­

Pic­ture: Jon Hew­son­mu­ni­ d474076

Sa­man­tha Shaffer with Nate (2 ) and brother Caden (9).

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