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Showing posts from September, 2015

A letter to my MP about rare & undiagnosed conditons

George Kerevan
House of Commons London SW1A 0AA


Dear George Kerevan,
All party parliamentary group on rare, genetic and undiagnosed conditions.
I am writing to you as my MP to ask you to join the All Party Parliamentary Group (APPG) on rare, genetic and undiagnosed conditions. Rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. Many of them are progressive, meaning that the health and quality of life for affected individuals will continue to deteriorate throughout their lives and many of those affected will die prematurely. The vast majority of rare and genetic conditions cannot be cured and most have no effective treatments. Families like ours frequently experience delays in gaining an accurate diagnosis for their or their loved ones condition and can struggle to access appropriate care and support. My son Reuben has a rare genetic condition that doctors have so far been unable to identify and he is currently on the Deciphering De…

Professionals v Understanding & Awareness

Dear Mr Audiologist,
You saw my son for the first time yesterday during a hospital appointment to see the ENT consultant. I saw you look at my Hearing Dog for the Deaf then you glanced at me and carried on talking very fast. A quick interruption was needed to tell you I was profoundly deaf and needed you to talk slower, clearer and facing me. But that proved too hard for you as I had to rely on my mum to explain some things that I hadn't managed to lipread. Not impressed at all. Then you started doing this test, talking to my son explaining what you wanted him to do. I watched quietly thinking to myself " have you read his notes? What part of limited understanding don't you understand?" I could see my son just copying your actions, not concentrating as he didn't understand what was expected of him. I said that this kind of test wouldn't work but you wouldn't listen and kept trying and getting slightly annoyed until you said " this isn't going to w…

Stop Staring!

Staring is something we have all done at some point in our lives...many say it's a natural thing to do but there comes a point where staring becomes rude, offensive and hurtful. 
A street entertainer doing amazing, unbelievable tricks making everyone stare - that's ok.
A person standing on steps, chair, stage to give a unprompted speech making people stare wondering what going to be said - that's ok.
A child sits in a wheelchair, screaming while his mother tries to console him and people stare, muttering under their breath - not ok.
A woman walking with a dog by her side, not a pet dog but a guide dog and people stand pointing and staring - not ok.
Staring has become a big part of my world as well as that of my family. It was easier when Roo was a baby as you couldn't really tell that there was something different about him...as he got older he remained using a buggy and we get comments like " isn't he too old for a buggy" , " he is lazy , you should be m…