Hypophosphatasia: Baby girl passes away in arms of teen mum just days after reaching first birthday
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Tiny Ocean-Rae passed away in the arms of mum Alice Lewis on October 13, just ten days after reaching her first birthday.
Ocean-Rae was born with a rare genetic condition called Hypophosphatasia (HPP) shortly after being discharged from hospital in Wales, last October.
HPP affects the strength and development of the bones and, in its more severe form, affects only an estimated one in 100,000 newborns.
In the case of Ocean-Rae, it also affected her kidneys, lungs and brain, the latter which caused her to suffer from uncontrollable seizures.
18-year-old Alice, who comes from Aberdare, has launched a funding campaign for her daughter’s funeral, backed by several members of her family who live in Doncaster and are keen to spread the campaign beyond Wales.
Alice said: “Me and my family are trying to raise money for my beautiful daughter’s perfect send off.
"Ocean-Rae got rushed into hospital at 17 days old for her heart rate and breathing and got diagnosed five days later with hypophosphatasia.
"She had difficulty breathing due to her condition which further down the line caused her to need a tracheostomy to help her breathe but she still was never able to come off the ventilator.
"Over the past year, Ocean-Rae started deteriorating due to her not responding to treatment which caused her to never be able to leave hospital.
"On Friday October 13, just ten days after her 1st birthday, Ocean-Rae sadly passed away in my arms.
"Ocean absolutely loved Disney princesses and the Ocean due to her love of Moana and Nemo, so we are really hoping you could help us give her the send off she deserves as she touched the heart of so many even people she hasn’t met.”
Alice is hoping to raise £2,500 to help pay for her daughter’s funeral and you can donate to the campaign, where money has already started to roll in, HERE.