“Don’t judge me, I can’t stop it,” is Lucy-Marie’s message to anyone who has suspicions about Tourette’s Syndrome.
The tics that the 12-year-old developed at the age of eight were initially a mystery to her and her mother Toniann.
But the involuntary movements, curses and “jolly” shouts became more frequent.
So she decided to write I Can’t Make It Stop to help herself and others.
Especially after she’s “become a shell” of her once confident and diva-like self.
“Some people are rude and tell me to shut up,” Lucy-Marie said.
“I’m very upset and I feel like I don’t want to go out and stay locked in all the time.”
But she hasn’t let those feelings get in the way of her goal of educating people about the condition.
The homework she was given while documenting her experiences in her room has now been incorporated into her first published book.
“I wanted to make the world and my class members more aware of Tourette. I give them a lot of credit because they really supported and helped me and my mom helped me with what to put where.”
Lucy-Marie said her dream came true after she “cheeky” asked her acting teacher to publish her book.
“Now that it’s out I’m very happy because most of my friends are very proud of me – it makes me happy.”
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In November 2019, Toniann thought Lucy-Marie had Krupp until “that coughing sound” went away.
It wasn’t until “one day she woke up with a noise that never went away” that Toniann realized she needed help.
Lucy-Marie’s mum said she felt “helpless” as she watched her daughter transform from her “calm and confident” self as her tics got worse during lockdown.
“This sound came on so strong and fast that she choked on eating, so she refused to eat and drink — it escalated from there,” she said.
“Now if you look at Lucy you can see the difference in tics as her personality changes, her voice changes, the tempo of her voice, she tends to screw herself up, roll over.
“When her Tourette started she changed, it was like a completely different kid. She became a shell of herself.
“She didn’t want to go out of her room, talk to her friends – she was panicking. We had no answers and no one knew what to do because there is no clear path.”
- A condition characterized by involuntary noises and movements, or tics
- Usually occurs in childhood – six years is the average age
- It is estimated that one in 100 school children is affected
- The cause is unknown but can sometimes be diagnosed along with ADHD, OCD, or learning disabilities
- It is rarely harmful to a person’s overall health, but physical tics can be painful
- There is no cure, but it can be treated with medication and behavioral therapies
Source: NHS
Speaking on BBC Radio Wales Breakfast, Toniann said she was proud of her daughter: “I’ve read the book a hundred times and every time I read it I choke a little, but more.
“It’s hard to have it on paper to see exactly what she’s been through over the last two years and how much it has affected her.
“It affected her negatively but also positively, it gave her the strength to stand up for herself. The book is a step forward in helping her do that.”
Trying to find support for Lucy-Marie was not easy.
“My GP was fantastic but there was no clear way to refer Lucy to,” Toniann said.
“One GP may go to CAMHS (Child and Adolescent Mental Health Services), another to a neurologist, but when you come to these people there is still no clear guidance on how to treat Tourette’s.
“There are a lot of resources available in other countries but not in Wales – it’s a matter of luck.”
She is among 10,000 others who have signed a Senedd petition calling for an “adequate, clear, clinical pathway and access to specialist care and medical care for people with Tourette’s Syndrome in Wales”.
This petition, which was closed in February, is now being examined for debate.
Toniann said she is “immensely proud” and wants her daughter to know this: “We want you to live your life to the fullest — you are wonderful and you deserve to do wonderful things.”
dr Jeremy Stern, director of Tourettes Action, said the lack of medical supplies was a “national problem”.
“Child mental health services are extremely overwhelmed with what they can handle,” he added.
“They often refuse referrals to screen patients with ticks, and sometimes patients are referred long distances from an area or region to even get a diagnosis.”
He said: “It’s really a condition that’s not that rare, so it should be available where people live.”
The Welsh Government said: “We are committed to ensuring that people with neurodevelopmental disorders have access to the services and care they need.
“We are working with families of children with Tourette who, along with the results of a review of demand and capacity of neurodevelopmental services, will feed into the development of a strategic action plan for neurodevelopmental conditions to be released for consultation this summer.”
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