One gi­ant leap for baby Olaya

Brit­tle-bone in­fant puts her best - and first - foot for­ward thanks to pi­o­neer­ing treat­ment funded by Jávea's lo­cal Span­ish and for­eign res­i­dents

Costa Blanca News (North Edition) - - NEWS - skett@cb­news.es

By Sa­man­tha Kett

A BABY from Jávea with brit­tle-bone dis­ease has taken her first steps – at around the same age as any other healthy child – thanks to treat­ment funded by res­i­dents.

Olaya, now 14 months old, was born with three ma­jor bone frac­tures and sus­tained an­other five within her first two weeks of life. Mum Laura Goberna, now 26, said she and Olaya's dad Is­mael spent sev­eral hours dress­ing and bathing their in­fant as care­fully as they could, but were still un­able to pre­vent re­peat bro­ken bones.

Laura's own mum re­fused to hold her grand­daugh­ter as she was fright­ened of break­ing her.

The fam­ily was re­ferred to Va­len­cia's pi­o­neer­ing La Fe Hos­pi­tal, but no spe­cial­ist was avail­able.

Luck­ily, a per­son there rec­om­mended they seek out an­other well-known expert in brit­tle-bone chil­dren at Getafe Uni­ver­sity Hos­pi­tal in the Greater Madrid re­gion.

But with Laura out of work and hav­ing to be Olaya's full-time carer, the fam­ily sur­vives on one wage and could not af­ford trans­port, ac­com­mo­da­tion and treat­ment – which is not cov­ered by the state health ser­vice.

Jávea ral­lies the troops

En­ter Jávea's warm-hearted, close-knit com­mu­nity, and thanks to Spa­niards and ex­pats alike rais­ing funds through con­certs, sports, so­cial events and do­na­tions, the baby has been able to go for her two-monthly col­la­gen in­jec­tions to strengthen her bones.

Although she frac­tured a fe­mur in the last two weeks, Olaya had not bro­ken a bone in many months – a record, given that prior to treat­ment she would suf­fer breaks roughly every two days.

Whilst her con­di­tion usu­ally means stunted growth and a life­time in a wheel­chair, Olaya 'never keeps still' – and has just walked for the first time.

“We're work­ing closely with a phys­io­ther­a­pist to re­in­force her mus­cles, so she doesn't break her bones,” said Laura.

She and Is­mael are now so in tune with their daugh­ter's con­di­tion that they recog­nise the type of cry­ing that means she has sus­tained a frac­ture.

'She cries if she sees a doc­tor'

The road ahead is still rocky – as soon as Olaya sees a white-coated doc­tor or nurse she cries, an­tic­i­pat­ing an­other in­jec­tion, and she will not be able to go to nurs­ery school.

She will have a spe­cial­ist carer with her at all times af­ter she starts school.

But Olaya is the ap­ple of her el­der sis­ter Gabriela's eye and, even at her young age, tries to copy ev­ery­thing she does.

And af­ter her next, and eighth, in­jec­tion in Oc­to­ber, Olaya will have a bone-den­sity test at La Fe.

Laura says she is 'eter­nally grate­ful' to Dr Mut of Dé­nia Hos­pi­tal for push­ing for them to get the ap­point­ment 'so soon'.

As well as fund­ing Olaya's treat­ment, the lo­cal com­mu­nity has made it pos­si­ble for the fam­ily to move to a big­ger house so the baby has more room to play, bought padded pushchairs, cots and car seats, and a hel­met to pro­tect her skull and help it de­velop nor­mally.

Those who have helped out are too nu­mer­ous to men­tion, but in­clude the char­i­ties To­dos Jun­tos Jávea and Grant A Wish, and the Lan­cashire Bruja bar, which held a char­ity con­cert in De­cem­ber.

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