Monthly ‘birthdays’ for poorly Clapton tot

Loving parents of a toddler with a rare genetic condition throw him themed birthday parties every month because they don’t know how many he will live to see.

Elijah Cariazo, who will always need a ventilator to breathe and suction tubes to clear his saliva, was born with a rare muscle condition called myotubular myopathy.

Most children with the illness do not live to school age, but Onessa and Jaroume say they’re determined to fit as much life as possible into whatever time they have with their son.

The tot is only 18 months old, but is about to celebrate his “18th” birthday on Saturday at home in Mandeville Street, Clapton.

Onessa, 36, and Jaroume, 38, have yet to decide on a theme, but previous parties have featured dinosaurs, the ocean, cars, and Thomas the Tank Engine.

Onessa, a nurse at St Thomas’ Hospital in Southwark, where Elijah was born, said: “Doctors said the best thing to do was to take him off the ventilator and let him die.

“It was a bleak prognosis, but we couldn’t say, ‘oh, you’ll die soon so let’s kill you now’. It’s up to God to take him away.

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“It was a battle for us to take him out of hospital alive. When he reached his one month ‘birthday’ we wanted to celebrate and took cake and balloons into the ward, and it’s carried on from there.”

Onessa said: “We’ll do it for as long as we have him – it’s a way of giving thanks.”

Elijah was transferred to Richard House Hospice in Newham at six months and stayed there for two months before going home. He still attends the hospice for respite care.

Now the couple’s friends are organising a sponsored Strictly Come Dancing event for October 20 to raise money for the hospice to “say thank you”.

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