Wigan mum calls for support as she backs Tourette's campaign
A mum has spoken about the reality of life with a child with Tourette’s syndrome, as she backs a campaign calling for more funding to support people with the condition.
Angie Darkey, from Standish, said it was “horrifying” when her son started to have tics and she had no idea what was happening.
The problem started when he was in year five at primary school and soon developed.
“Within six months it started to become a bit more complex tics. There were arm movements, clicking noises, all of the different kinds of tics. They were quite prominent really, every day,” she said.
“It’s quite horrifying, especially when you see it on your own child and don’t know where to turn to. I didn’t think of Tourette’s. I wondered what it could be and didn’t know it was tics. I didn’t know if it was some kind of seizure or epilepsy.”
Angie mentioned the issue to a paediatrician seeing her son, but said they were “a bit blase” and hoped the issue would go away.
But it was not something her son - who has asked not to be named - could not just ignore.
She said: “He didn’t know what was happening. Sometimes he didn’t even know it was happening.
“For us to watch as parents, it was heartbreaking because we didn’t want that for our child.”
Three years later the family managed to get an appointment with a paediatric neurologist at Alder Hey Children’s Hospital in Liverpool and Angie’s son was diagnosed with Tourette’s syndrome.
It is a condition that causes a person to make involuntary sounds and movements called tics. There is no cure, but the NHS says treatment can help to manage symptoms.
Angie said: “That was a big relief because finally we knew it had a name. We were pretty sure by then it was Tourette’s.”
But unfortunately a diagnosis did not mean Angie’s son, who is now 14, could get the help he needed.
The paediatric neurologist left Alder Hey and they struggled to get support through the NHS, being passed between services.
Fortunately, the family has had a lot of support from staff and pupils at “absolutely fantastic” St Peter’s High School in Orrell, which her son attends.
And parents of other young people with Tourette’s did provide a vital lifeline, as they used social media to help each other.
Angie said: “Speaking to other parents gives you that comfort, because there was no-one else to turn to.
“If your children had epilepsy or cystic fibrosis or something that there is no cure for, the paediatricians and the professional services would be available for you. For Tourette’s, there isn’t.
“Particularly in Wigan the paediatricians want to help, but there are no NICE guidelines, they don’t know anything about Tourette’s. They may want to help, but they don’t know how to help.”
It is why Angie is speaking out to raise awareness of Tourette’s syndrome and back a petition calling for more funding to provide support and research into it.
She said: “My son has a whole slew of tics, some which happen in the inside. He has a stomach tic which leaves him in agony. A lot of people think Tourette’s is just swearing. My son doesn’t swear, but he still says random words and can make random noises. It’s so much more than swearing.”
The petition was set up by Emma McNally, from St Helens, whose 13-year-old son has Tourette’s syndrome. So far it has more than 57,000 signatures and will be considered for debate in Parliament if it reaches 100,000 - but time is running out as the petition closes on Monday.
Emma said: “Tourette’s can affect anybody at any time.”