Julie Sparrow has Meige Syndrome (also known as cranial dystonia or oral facial dystonia). Here Julie tells the story of how her son Thomas coped with his mum having dystonia.

Meige syndrome is a combination of two forms of dystonia – eye dystonia (blepharospasm) and mouth, tongue or jaw dystonia (oromandibular). It is characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements in the eye/s, mouth, tongue and jaw.

Thomas was about 6 when I was diagnosed with dystonia (Meige Syndrome).

My husband, Thomas and I went to the hospital on Christmas Eve for me to see a consultant, with the hope that I could have injections to relieve the symptoms. Thomas was fascinated by all the equipment and asked lots of questions.

He is now 20, so hasn’t known me without dystonia but has an innate empathy of how I feel sometimes. In 2013 I decided to have DBS surgery, and wanted Thomas, then aged 13, to be involved with what was going to happen. I took him with me to a pre-operation assessment. I was sitting on a bed and he was next to me. I was a bit nervous when about eight doctors and consultants came and stood round the bed. I was overwhelmed by all these people and began to cry.

Thomas held my hand and told me “it will be alright Mum!” I had the operation successfully.

Sometimes when I walk my eyes close and if I am out with Tom he is aware of this and moves me out the way of anything I might have bumped into saying things like “mind that step” or “lamppost Mum”. He is at University now and wants to raise money for dystonia research. I am very proud of him and thank him for his support.

I recommend other people with this condition to involve their children as they are more aware than you might think.