'She will never be like other children', baby's parents were told
PUBLISHED: 13:49 15 August 2019 | UPDATED: 16:53 15 August 2019
At only five months old, the family of a baby girl were told she would never be like other children.
When Nina Ferreira Meireles was born August 5, 2014, four weeks prematurely, at West Suffolk Hospital in Bury St Edmunds, doctors had to resuscitate her five times.
For the first two weeks of her life, Nina was under the watchful eye of the hospitals neo-natal care unit and her family who refused to leave her side.
Carla Ferreira, mother of Nina, said: "When she had to be resuscitated her dad and me were unaware because they acted so quickly. We could only see her after five or six hours later and she had all of these machines connected to her and she weighed less than four pounds.
"At the hospital they only have two rooms for parents to stay. I didn't want to go home so they let me stay for two weeks, but they said if we need the room then we will need to take it back and that was so hard for me.
"But I didn't want to leave Nina. I thought I'm not leaving until she leaves with me."
Finally told their little girl was well enough to go home, Nina's family could not have expected what they would find out five months later.
Nina was diagnosed with a rare genetic disorder which doctors feared would mean she would never be able to walk or talk.
With little research into the condition, her parents were once again left to come to terms with their daughter's uncertain future.
"When Nina was five months, we thought that she wasn't doing what she was supposed to be doing for her age," said Ms Ferreira, owner of Traquinas child care in Thetford.
"That's when everything started. We went to genetics and they did some testing. Eventually they told us Nina is never going to be like our older son Noah and she will need your support all of her life."
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But despite having global development delay and the unknown syndrome, Nina has defied the odds and today is an active and happy little girl who has just celebrated her fifth birthday.
Ms Ferreira added: "As far as we know there is no-one like Nina, and because it's so rare they don't have enough data to do research. So she is a box full of surprises. But when you have a child with special needs you just go with it."
Described as a funny and loving little girl, who brings joy to the life of those who meet her, Nina is now walking and communicating despite being told she wouldn't.
Although she will soon need an operation for her hearing, Nina is doing well at home and will soon be leaving her parents nursery and starting school in September.
The Ferreira Meireles family, who own Traquinas childcare nurseries, are raising funds for the West Suffolk Hospital, which supported them after their daughter was diagnosed with a rare genetic disorder.
Georgia Tanner, deputy manager of the nursery on Croxton road, Thetford said: "Nina was coming up to her 5th birthday and so we thought it would be a really nice idea to raise some money for the Rainbow and Neonatal ward at West Suffolk Hospital because she has been in and out of there since she was born.
"We contacted the hospital originally and said we wanted to do some fundraising and they said they were looking at updating their outside area because at the minute they don't have many toys for the children."
Since June the nurseries have raised £830 for the children's wards through a walkathon, campout and raffle.
Staff at the nursery are hoping to reach £1,000 before they officially hand over the money to the hospital in September.
Ms Tanner added: "We have told the hospital how much we have raised so far, and they were shocked and said they will be able to do a lot with it. At hospital it is never a nice place to be, but for a child having a play area would be so beneficial."
Carla Ferreira, Nina's mother, said: Nina goes there nearly every month and they all know her and we have a really close relationship. It's such a small hospital but they are really good and so we thought it was a good thing to do for them.
"I feel extremely proud of Georgia and Tracy for having the idea and raising the money that will make a difference."