Karey Mason, from East Sussex in England, was recently
faced with a near impossible choice which no parent should have to make. She
could relieve her daughter’s constant and unbearable pain – but the treatment
would rob her of her sight.
Maisie Doswell, now 14 years old and with all the
hopes and aspirations of any other teen, was born with a serious genetic
disorder. There’d been no early warning signs in the womb but shortly after her
birth doctors already suspected something was gravely wrong with the baby.
Maisie was later diagnosed with Myhres syndrome
– a condition so rare there are only 30-40 other sufferers in the world. One of
the more serious symptoms of the condition is blinding headaches – which in
Maisie’s case got so bad she had to take morphine daily and was barely able to
Eventually mom Karey, who divorced Maisie’s dad when
her daughter was three and is her full-time carer, has made the difficult
decision to have a shunt inserted in Maisie’s skull to relieve the pressure on
her brain. This will ensure Maisie can live pain free.
But the implant will gradually deprive Maisie of her
“We had to choose between giving her back some of her
life and allowing her to get up and go out without headaches, or keeping her
sight,” Karey says of her difficult choice.
“We don’t know how long it will be before she can’t
see at all, although we think it will be months rather than years. But she was
in so much pain, I still believe we made the right choice.”
Maisie’s courage and determination last year earned
her the outstanding young person of the month award from Sussex Coast College
Hastings and the Hastings Observer.
Despite having to undergo numerous operations during the
past five years, Maisie – a student at Robertsbridge Community College – has
kept up with her schoolwork as best she could and her mom describes her as “the
most courageous teenager you’ll meet”.