ALEX

“Alex loves spending time with her family, going out for coffee and watching the soaps and any reality TV”, reported Alex’s parents as we talked to them about their experience of her rare condition.

“She has Leigh’s disease and idiopathic intracranial hypertension. She has problems with energy production and often spends a lot of time in bed, with severe fatigue. She suffers with Myoclonic jerks which are a form of epilepsy and she also has severe nerve and muscle pain that unfortunately pain killers cannot control at its worst points. She often feels nauseas and can often retch (quite loudly!) which is always good down the fruit aisle in Asda! Her cognitive skills are affected quite a lot of the time and it takes her time to process what you are saying. 

“Alex very rarely complains about the way she feels but does get quite low, anxious and depressed. She can get very stressed and anxious when she feels unwell or in new situations which zaps her off all her energy resulting in her sleeping days away. 

She loves going on holidays - especially to Florida to see Minnie and Mickey, and her favourite, Jimminy Cricket! Family is very important to her, but so is chocolate and sometimes she finds it hard to choose between the two! 

Alex looks very young for her age so sometimes its hard work if she wants to buy a lottery ticket, or try a free sample of the baileys chocolate in the local supermarket. Everyone asks her for her ID but she is very obliging and will often pre-empt their reaction, having her ID out before they even ask!

Alex’s condition has had a massive impact on our family life.  Even though she has always had learning problems, she was fit and healthy until her first stroke at the age of 17 when she was diagnosed with Leigh’s disease. She has since gradually gone downhill and this has been a very hard and steep learning curve for us all. Throughout these very difficult times I always stick to my motto ‘It’s no good wallowing in your own self-pity, that will not change anything, and if we wallow we may well miss out on the good times and the memories that can be made’. 

Alex has a specially adapted downstairs room where she sits in her bed with her cat Minnie shouting her orders to the rest of the family!”

“I always say I would never change who Alex is, although I would take away her nasty illness and the way she suffers, but I do feel Alex has definitely made me the person I am today, and if it wasn’t for her I don’t know who I would be. She has brought so many inspirational and wonderful people into our lives.

We were happy to take part in the Rare Project because it’s good to show that you don’t always need to look disabled to have a disability. People are so quick to judge and I feel education is the key; this project will do that”.