Thursday, 3 March 2011

Incredibly Frustrating

The life of my child is in the hands of scientists.

Ataxia Telangiectasia is on research lists all around the world.
Five "clinical trials"  are occuring in America alone in 2011.

When we all began researching this disease a few weeks ago, a report in The Oxford University Journals has me frustrated, still now.
I did not understand the medical jargon but it discussed the brain of an A-T child. It had pages written about how an A-T child's brain is different than everyone elses.
It was all there. Measurements, levels and the abnormalities and I found myself yelling at the computer "well if you know what is wrong then fix it". But they obviously can't.

Research groups around the world are working every day to try and find a cure for Ataxia Telangiectasia. Something the Americans describe as " take the worst of cerebral palsy, cistic fibrosis and muscular dystrophy and you have A-T". But they cannot even find something to help slow the process down let alone a cure.

Children are very ill and dying from this disease and THEY cannot find an answer.
So incredibly frustrating.

Recently I have found myself wondering about the scientists themselves.
Are they going down the correct pathway for an answer?
Is everyone working together so research is not overlapped?
Are they dedicated and motivated to find an answer?
Are they good people with our children first and foremost in their minds?

In the past seven days I have learnt a lot about the reality of our situation. How the future is more daunting than I have allowed myself to believe.
But it is not us that I am worried about.
Amelia's future is very frightening and we will have to try and support her the best we can.
To place the hope for a better future, to keep her alive, in someone elses hands is just as frightening.

But if they cannot find a cure for cancer, with so much more funding and research occuring, then I wonder if I am hoping for the impossible......

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