I’m running the London Marathon for Tourette’s Action because they saved me. They saved my family really. I was ready to go under when out of desperation (someone at work said ‘isn’t there a charity that can help?’) I contacted Tourette’s Action for myself. 

We had been managing severe tics, meltdowns, anger, sensory difficulties (undiagnosed cooccurring ADHD & autism as well) and so much more, with very little and no meaningful support. We were on our own. We were isolated. We were scared and although it’s hard to say now, we were a bit ashamed - mostly that our child had this neurodevelopmental disorder that we could do nothing to fix and very little to ease. Evie was in pain, she was frightened, she was fighting hard to keep her life the way she knew it, she was mortified by her tics and desperate not to stand out and we couldn’t help. 

We were helping of course - but we were balancing our other childrens’ needs with someone who needed massive physical, mental and emotional support. Round the clock sometimes. We were both working and we were overwhelmed. Exhausted and at the end of what we could manage.

Our darkest time was watching our child consumed by shame and despair and becoming suicidal. Unable to leave her room let alone the house, isolated from friends and school and really really unwell. We were all desperate. 

The befriender at Tourette’s action was an absolute light in the dark. I cried down the phone at a complete stranger, spoke about my feelings of inadequacy as a parent for the first time out loud. All the struggles, the ‘voices’ telling her to end her life and I began to find some space in my head to learn about Tourette’s - something that even if I’d been strong enough to do before, I just couldn’t face.  We talked about how amazing people with Tourette’s are and for the first time I heard someone describe the disorder as a ‘superpower.’ I heard a story of success, a story of other siblings actually coping living with someone who tics. Loudly. All the time. 

I heard that struggles are real, these kids are often misunderstood, isolated and have to fight for what others take for granted. But I heard that this fight and determination is what wins through, what makes them more compassionate, kinder, more insightful, inclusive and understanding than their peers. 

This positivity turned my life around, validated my feelings, gave context to the life we were struggling to keep on some form of straight and narrow. And my family followed and we found some help and we moved forward. We weren’t feeling isolated or alone anymore.

Evie now has a network of peer support (the best kind) and the experience of staying away from us for the first time in years, with the TeenFest weekend the charity provides. She is not alone, we are not alone and our family is not alone. 

There’s very little support for people with Tourette’s but this charity is working sooooo super hard to change that. To change lives - literally change lives for the better. Please give what you can to support me to give something back.

Thanks for taking the time to visit my JustGiving page.

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