Maude has a special reason to remember 9/11

0
Have your say

The horror of 9/11 is etched on the minds of everyone who saw the events unfold in New York before their eyes on TV.

But for Maude Brownlie, a former nurse from Gattonside, she remembers the atrocity as the same day her grandchild Harry was tested – and later confirmed – as the second member of the family to be diagnosed as a fragile X sufferer.

The confirmation of the syndrome, a mystery inherited condition which leads to learning difficulties, was to change their lives forever.

She was soon tested herself and confirmed as a carrier of the condition which has been traced back to her Wimbledon-winning grandmother Helen Maude Garfit.

And later, more tests revealed that Maude’s loss of balance and head tremors were caused by fragile X associated tremor ataxia syndrome – a condition among older carriers of fragile X.

It proved a double whammy – not only had she passed on the faulty gene to her daughter Liz and ultimately her two grandchildren Ewan and Harry, but her own health was suffering.

She became depressed and suffered mood swings, much like anyone would in such a situation.

But rather than accept she could no longer could live the life she had, the 68-year-old made the brave decision to take part in a drugs trial in the United States.

Six years on, the drugs have worked and while her tremors are noticeable, they do not impede on Maude enjoying life with her extended family.

In the circumstances, it would have been acceptable for her to take it easy and just be glad to have regained her health.

Not Maude. Instead, she decided to help others and was at the forefront, with daughter Liz, of a fund being set up in the name of Maude’s grandmother to pay for further research into the almost unheard of syndrome.

While it might not have affected the lives of as many as cancer, fragile X is still worthy of significantly more publicity and inquiry than is presently being devoted to it in the UK.

More research could lead to families such as Maude’s being saved from the pain and sadness they have been on the end of for almost 10 years.

And it would give Maude Brownlie the satisfactory ending that she and her family deserve.