Franki needs your help

Cockburn Gazette - - NEWS -

In hours and after hours med­i­cal centre Our fam­ily owned centre of­fers qual­ity med­i­cal care at your con­ve­nience. Phone and walk-in ap­point­ments avail­able 7 days WHY Franki Moura is un­able to sit, stand, walk or talk at 15 months of age re­mains a mys­tery.

He is among a group of peo­ple who are sup­ported by Syn­dromes Without a Name (SWAN) while await­ing di­ag­no­sis.

Franki’s mother, Vera Moura, said scans late in her preg­nancy failed to pick up that his skull had fused pre­ma­turely and she was al­lowed to at­tempt a nat­u­ral labour when she should have had a booked cae­sarean.

That 36-hour labour fol­lowed by an emer­gency cae­sarean sec­tion was just the be­gin­ning of a long jour­ney to un­der­stand Franki’s con­di­tion.

At three months, he had surgery to sep­a­rate his skull and in­sert two springs so his brain could have room to grow.

As a fam­ily, they are hop­ing to at­tend up to three world renowned ther­apy centre NAPA pro­grams next year, cost­ing $10,000 each, that would pro­vide in­ten­sive treatments for Franki to ac­quire new skills.

To raise funds for the NAPA pro­grams, as­so­ci­ated travel to Sydney and the ad­di­tional tests, the fam­ily has set up a crowd fund­ing cam­paign through chuffed.org and com­peted in the re­cent City to Surf.

A movie fundraiser showing of Bad Mums has sold out for Novem­ber and the Portuguese Club will host a fundrais­ing din­ner on Septem­ber 23, with tick­ets still avail­able.

At the mo­ment, un­der NDIS, Franki has ac­cess to the equiv­a­lent of just one hour of ther­apy a week.

“At Ward 5 at PMH, most fam­i­lies have gone to NAPA and they say re­ally good things,” Mrs Moura, of Mun­ster, said.

Franki is the younger of two chil­dren and Mrs Moura said deal­ing with the uncertainty was like “be­ing in a con­stant state of free fall”.

“Not know­ing does my child have a de­gen­er­a­tive dis­ease, will it shorten his life ex­pectancy – it’s re­ally day to day,” she said.

“He’s not a very so­cial child; he doesn’t smile much but when he does it’s the most beau­ti­ful thing.

“It’s just find­ing your new nor­mal.”

Franki has his own web­site. Visit franki julesmoura.net or look up Franki Jules Moura on Face­book for more in­for­ma­tion.

Pic­ture: Will Rus­sell d473031

Vera Moura with her 15-month-old son Franki.

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