'My toddler's bones are so brittle even a hiccup could break them'

A toddler has a rare health condition which means her bones are so brittle that a cough, hiccup or even a cuddle could break them.

Natarlia Nappi has a severe case of osteogenesis imperfecta - also known as brittle bones. She was born on May 16, 2022, with her leg over her head and multiple breaks. Mum Nicole, 41, had been told by doctors that her baby might not make it.

Nicole and Natarlia's dad Peter Nappi, 35, have to handle their baby with great care, as even a cuddle could cause a bone to break. Nicole, who is the co-owner of a painting and decorating business, said: "We're learning to live with it - mentally it's destroying. We believe she's only the fourth person in the world with this type.

"We don't let anyone near or hold her and my other kids are learning to hold her. It's not worth someone having a cuddle and her getting a break."

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Nicole said some babies with the condition can have up to 70 breaks a year. "That's when you realise how fragile she really is," the mum said. "She's our miracle baby but life has stopped and changed - there is a pressure."

Speaking about her rocky pregnancy, Nicole explained: "They found an abnormality on the scan and at one point we were told it could be dwarfism then skeletal dysplasia but none of them were correct. We went for more scans in London at five months and they told us she was very sick and she might not make it.

"They said they could terminate it there and we just walked straight out. I knew she was something special. Whenever she'd move about she'd do it for a couple of days, then she'd go quiet in my belly for a week - I knew she'd survive."

Nicole said her baby was delivered still inside the amniotic sac "to try and not break her any more than she already was". But when she went into labour it was "crushing her and breaking her even more".

"When she was born they couldn't count how many breaks she had," Nicole said. "She had her legs over her head but she survived it. When a nurse put a wristband on her it broke her arm in two places."

Luckily, Natarlia, now nearly two and a half years old, made it through her early years without any major breaks. Nicole says her daughter is now "smiley and happy as larry" despite her weighing only 14 pounds because of her condition. She said: "She's happy and she's buzzing off of life. She doesn't let things phase her."

But in recent weeks, the toddler broke her femur bone and her leg has been put in a special spica cast until she is old enough to be operated on. Nicole and Peter, from East Sussex, have started a GoFundMe to raise funds for a padded play area that Natarlia can use.

Nicole explained that the toddler broke her femur after she threw herself and caught her leg in September of this year. They took her to the local hospital and were told she'd need an operation for a metal rod to be inserted in her leg.

The couple decided to get a second opinion from a contact at Great Ormond Street Hospital, who said she wouldn't be able to cope with the operation due to her size. Natarlia was then transferred to Brighton Hospital where her leg was put in a special spica cast until she is big enough to be operated on.

Peter, who runs the business with Nicole, said: "When you take into account that there are three types of this - mild, moderate and severe and Natarlia was the top end of severe, the fact that she hasn't had a break in two and half years is unreal. But this break is a kick in the teeth."

Nicole said: "She won't survive an operation with how weak she is right now but she needs one on her leg. After speaking with GOSH and Brighton Hospital they said there's no way she could cope with having bolts and rods put in her leg. Brighton Hospital was great and they put her in a spica cast within two hours and we were home the next day. The leg that's just broken will now probably be her weakest bone."

Natarlia has to have infusions to strengthen her bones and painkillers every eight weeks to deal with the pain but her parents don't currently know what the future holds.

Peter said: "It's hard to answer those questions. We have to live one day at a time. Even the specialists can't tell us what the future will hold - we have to live for the day.

"She's still only 14lbs so she can't have the op at the moment with the condition she has. The bigger she gets, the safer she gets. It's an intense surgery."

The parents are fundraising to get a padded room for Natarlia so she can play safely. "We're always worried if someone bumps into us," Nicole said. "We have to watch bumps in the road when driving. It's always been me and Peter and we haven't had much support. My twins can't run around the house anymore as we're worried they might bump into Natarlia.

"We're trying to get help for this padded room for her so she can play without worry."