Mum and baby battle rare genetic disorder

NMAC11-1224-6''Kirkby mum Emma Campbell is pictured with her duaghter, 15 month old Chloe at their home on Monday. Emma and Chloe both suffer from a rare disored called Aperts Syndrome.
NMAC11-1224-6''Kirkby mum Emma Campbell is pictured with her duaghter, 15 month old Chloe at their home on Monday. Emma and Chloe both suffer from a rare disored called Aperts Syndrome.

AT just 14 months old, Chloe Campbell has already spent more time under the surgeon’s knife than many people will experience in their lifetimes.

But as she crawls happily around her mum’s living room in Kirkby, giggling as she pushes around brightly coloured balls, it’s hard to imagine what she’s been through.

The toddler is one of only a few dozen people in the country with the condition Apert Syndrome, a rare genetic disorder.

It meant she was born with all of her fingers and toes fused together and the bone of her skull already knitted like an adults, trapping her growing brain inside.

The result means she has already had three operations and can attract the curious stares of strangers.

But in mum Emma she’s already got the best-qualified expert available.

She also has Apert’s, giving the two of them an extra-special bond.

“They think we could be the only mother and daughter pair in the UK with the condition,” said Emma (28).

“My mum knew when she was carrying me that there was something wrong but there wasn’t as much knowledge of the condition back then.

“I had at least 20 operations but I went on to do all my GCSEs in one go and passed my driving test in a normal car, so I turned out fine.”

Chloe, like many Apert’s sufferers, was born with an unusually-shaped head which needed specialist surgery at Oxford John Radcliffe Hospital in October.

Further surgery followed which separated some of her fingers, with more to come.

Apert affects only around one in 164,000 babies and can appear apparently at random, although parents can pass it to their children.

It is caused by a genetic defect - one tiny change in a single ‘rogue gene’ is enough.

Although Chloe has coped well with all her operations, tough tests will also come later in life.

“It can be annoying if you are walking around the supermarket and someone’s child will be really staring at Chloe, and the parents don’t stop it,” adds Emma.

“I’d rather they just told them to approach us and ask about the condition than let them do that.”

Time will tell whether Chloe will face any problems with her mental development, though for now apart from her unusual features she is every bit the typical curious, playful happy baby.

Said Emma: “If she comes to me and says someone has said something to her I’ll tell her to do just what I learned to do; ignore it.”

Emma’s mother Heather Drew, who now lives in Scotland, said: “It will be different for them than it was for me with Emma - surgery has advanced for a start.

“Emma was positive she wanted to have Chloe and I was behind her all the way.”

Emma and Chloe will appear in the BBC2 documentary series, Children’s Craniofacial Surgery, at 9pm on Monday as part of Emma’s plan to brush away ignorance of the condition.

Added Emma: “It would be nice for people to know more about it and not just walk past staring.”