Metronidazole (also known as Flagyl® or Metrolyl®) may cause acute liver failure in children with Cockayne syndrome and should be avoided. Please alert your doctors to this.
Health professionals can obtain further information from Dr. Brian Wilson
Any further drug reactions in this patient group should be reported to the regulatory authorities in your own country.
|Amy was born early by C. Section and at around 14 months it was apparent that she had growth but not developmental problems. After birth Amy grew and put weight on very slowly.|
“When I was a little girl I could run and ride my
bike but then I got tremors and began to lose my
balance. I started to wear glasses and then couldn't
hear very well either. Lots of things started to go
wrong with my body which made me sad for a while.
Some people can't understand what I am saying now
but if you listen carefully and give me some time
you will be able to. I need to use a wheelchair now
because my silly legs won't work properly. My
kidneys have gone wrong and I have high blood
pressure, an underactive thyroid, a brain tumour
(which is unusual for CS), my back is bent, I have
horrible acid and I have diabetes which makes me mad
because I love sweets and hate needles! I have met
lots of friends, some are little babies who I love
to cuddle. Some can't ever walk or talk, some can't
eat or drink without a tube, some of my friends have
gone to heaven now – but all of my friends can smile
and we smile – A LOT!! I help with research
programmes and I help to raise money to help the
The pictures below are Amy and Duchess of York and Princess Beatrice, Amy and Sinitta, Amy and Duncan Bannatyne.
Amy's doctors were
asked by her parents if she could be
given a Parkinson’s disease drug to
help with her tremors, they were
then sent to meet Dr Kang
(neurologist) who agreed to trial Amy
with a drug which proved successful.
Within ten days Amy's tremors had essentially gone, she was more 'switched on' and able to do basic tasks again.
Amy is a happy, loving, fun girl. She has a huge personality despite her many problems and when you are in her company you feel a tremendous sense of love.
To date: Amy continues to deteriorate but not without a fight - she is a source of inspiration to all those who know her.