Polegate parents fundraising for daughter with osteogenesis imperfecta

Natarlia Nappi was born on May 16 this year with multiple fractures to her arms, legs and ribs which occurred in the womb. 

Her parents, Nicole Croxton, 39, and Pete Nappi, 33, from Polegate, were told that their daughter has a genetic bone disorder called osteogenesis imperfecta (OI) or brittle bone disease.

During Nicole’s second scan in the early months of her pregnancy, Natarlia was found to have a fracture in one of her femurs. 

Every scan then began to show further breaks and curvatures in her bones. Nicole and Pete were also told that she was nine weeks smaller than she should have been.

When she was born, Natarlia weighed just three pounds due to also being born three weeks premature.

She has already fractured her wrist since birth and the tiniest movement can cause more breaks due to her bones being so soft.

Any fracture Natarlia experiences cannot be treated because putting a splint on can hurt her further, Pete says that she has learned to protect herself by keeping the broken bone close to her body while it heals.

Natarlia cannot sit upright because her spine could break and she cannot lie on her front because she will break her ribs.

Pete said: “We can’t pick her up, we can handle her, but we can’t hold her or wind her. She’s always on a pillow, you have to pick her up on a pillow. She’s like china. 

Natarlia and her siblings

“It’s so different, you almost forget how you hold a normal baby, how you would change their nappy - you’d lift their legs up, how you would burp her - you’d put them on your shoulder - we can’t do that.

“Even putting her in a buggy, the bumps in the pavement, they can all hurt her. It’s the simple things that are so risky for her.”

Nicole and Pete, who already have four children at home, were told that they have to take each day at a time because it will be unclear how the disorder will affect her until gets older.

Pete added: “We’re living one day at a time and every day is amazing, anything we have to do or learn we will. We have to, she’s our baby.

“She’ll live a normal life for someone with OI but she’ll never live a normal life like other children.” 

Now, Nicole and Pete have set up a Go Fund Me page to raise money to transform their garage into a safe soft play room that will allow Natarlia to play in a way that won’t harm her. 

Pete said: “Every child needs that - they need to laugh, they need to learn, they need to play.

“There’s never going to be a day that we can take her to a public park so this will be her safe space.

 “It’s a blessing and an honour to have such an incredible baby, she’s so special - it’s difficult but it’s more of a pleasure than it is difficult.”

To donate to Natarlia's fundraiser please visit: https://www.gofundme.com/f/funding-for-special-oi-baby-natarlia