Milly’s story of living with Crouzon syndrome

Milly with her mum, Vicky

Milly is 9 and has a genetic disorder called Crouzon syndrome.  It’s a cranio-facial disorder which means that the bones of her skull were fused together when she was born.

The back of her head was compressed which made it difficult for her to breathe.  The condition affects around 1 in 60,000 babies in the UK and is caused by a problem with one of the genes responsible for the growth of her bones.

Milly has had numerous operations at Great Ormond Street Hospital in London.  Last spring she had major surgery to fit a frame to her head which would separate the bones in her skull. 

She spent thirteen weeks in hospital while the wires in the frame were tightened each day to gradually encourage the bones to move.

  "Jeans for Genes Day has made life easier for Milly.  It means that she is able to use her condition in a positive way to promote awareness of conditions like hers.  Not many of us will go what she's been through.  I'm proud to be her Mum!” Vicky, mum to nine year old Milly who has Crouzon syndrome

Milly having her frame adjusted 

She can breathe more easily now.  It’s also given room for her brain to grow and for her eyes to sit where they should.  But she faces many more operations until her bones stop growing around the time she’s 18.

“We’re so grateful to Jeans for Genes,” says Milly’s mum, Vicky.  “They’ve done so much work to raise awareness of genetic disorders; our whole community seems to take part!

Jeans for Genes Day has made life easier for Milly as she is able to use her condition in a positive way to promote awareness of conditions like hers.

Not many of us will go through what she already has had to, and yet she remains a positive little girl.  I'm proud to be her Mum!”

Milly won a Children of Courage award in 2007 and she’s also got a Blue Peter badge for bravery.