Through the Rare Project we introduce you to the people behind their rare conditions.


Alex is a very loveable and personable character, she has a knack of wrapping everyone she meets around her little finger.  She is kind and has a very wicked sense of humour, Alex loves spending time with her family, going out for coffee and watching the soaps and any reality tv.

Alex 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 gets very stressed and anxious when she feels unwell or in new situations which often zaps her of all her energy resulting in her sleeping often hours and days away. 

Alex loves going on holidays especially to Florida to see Minnie and Mickey, and her favourite Jiminy 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 often is already pre-empting their reactions and has her ID out before they can ask!

Alex’s condition has had a massive impact on our family life.  Even though Alex 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; she quite often 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 Projectbecause 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, and this project will do that.

In terms of support organisations we have used Climb ( on a number of occasions and they have been great.  We are also in touch with Leigh Network.  It is a small charity run by a young girl affected by Leigh's Disease. 

Find out about some of the other children we have featured in the Rare Project by clicking here.