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.
You may also want to watch:
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.
- 1 Man dies after reports of shooting in Dalston
- 2 Boat party organiser pleads guilty to breaking Covid rules during lockdown
- 3 Dalston shooting victim named by police
- 4 All Points East: Meet east London artist Olivia Dean
- 5 'The pressure is intense': Hoxton vegan chef competes in Great British Menu
- 6 What can open in Hackney when lockdown rules ease on May 17?
- 7 Election 2021: Hackney by-election results revealed
- 8 London Fields: Woman's cheekbone fractured in broad daylight attack
- 9 Hackney New School to complain to Ofcom over damning ITV report
- 10 'Massive stabbing' in Old Street: Man attacked outside Moorfields Hospital
“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”.
To donate, visit www.justgiving.com/prancingqueens.