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One in 65,000: how Gracie was born with fingers and toes fused together

PUBLISHED: 16:49 05 November 2019 | UPDATED: 16:49 05 November 2019

Gracie Wooltorton, who was born with the rare genetic condition Apert Syndrome. PHOTO: Emma Wooltorton

Gracie Wooltorton, who was born with the rare genetic condition Apert Syndrome. PHOTO: Emma Wooltorton

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A mother has told how her one-year-old daughter is coping with a rare genetic condition which has fused her bones together.

Gracie Wooltorton with sister Summer. PHOTO: Emma WooltortonGracie Wooltorton with sister Summer. PHOTO: Emma Wooltorton

There was nothing unusual about Emma Wooltorton's pregnancy with Gracie, but when her second daughter was born, the youngster was left with her skull fused together, as well as the bones in her fingers and toes, through Apert syndrome.

The condition is so rare, affecting around one in 65,000 newborns, that Gracie is only the second baby born at the Norfolk and Norwich Hospital in 30 years to be diagnosed with it.

Mrs Wooltorton said: "I just had a regular pregnancy, but I had an emergency c-section and when I came round from the anaesthesia they told me there was something wrong with my baby.

"I thought 'there can't be'. We had all the scans and everything was fine. They rang Great Ormond Street Hospital (GOSH) and explained it and they suggested it could be Apert syndrome. There was only one other baby born there in the last 30 years with it."

Gracie Wooltorton, who was born with the rare genetic condition Apert Syndrome. PHOTO: Emma WooltortonGracie Wooltorton, who was born with the rare genetic condition Apert Syndrome. PHOTO: Emma Wooltorton

The 13-month-old, from Beccles, has now had nine operations, with more to come.

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Mrs Wooltorton said: "All of her fingers and toes were joined together, they all share a knuckle. The bones are there, but they're fused so she needs operations to slowly separate them as much as they can.

"Her toes are fused too but unless she has difficulty walking, which she doesn't seem to be showing, then it isn't causing her any pain. The biggest thing is the pressure in her skull. She had major surgery when she was three months old to put springs in her skull to keep it off the brain, but they may need to put bigger springs in when she grows."

Gracie Wooltorton, who was born with the rare genetic condition Apert Syndrome. PHOTO: Emma WooltortonGracie Wooltorton, who was born with the rare genetic condition Apert Syndrome. PHOTO: Emma Wooltorton

In recognition of GOSH, Mrs Wooltorton's brother-in-law Richard Wooltorton and family friend Tanya London took part in a tandem skydive last month, raising more than £1,500.

Mrs Wooltorton said: "I knew he wasn't a fan of heights, but they wanted to do something for her and to raise awareness of the condition and for GOSH. It was just amazing.

"Gracie is just a regular little girl. She is very happy at home and plays a lot with her three-year-old sister.

"Despite everything she goes though, she is still really happy and communicates well."

Gracie Wooltorton, who was born with the rare genetic condition Apert Syndrome. PHOTO: Emma WooltortonGracie Wooltorton, who was born with the rare genetic condition Apert Syndrome. PHOTO: Emma Wooltorton

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