A Merseyside mum whose family "is in crisis" has said she "wouldn't wish" her daughter's condition on anyone.
Mum-of-four Michelle Musselwhite, from Kirkby, said she began to seek support for her daughter Amelia when she was still in primary school, but it wasn't until she reached secondary school that she was actually given any form of diagnosis.
Read more: 'Funny outbursts and bangs' exposed schoolgirl's condition
Amelia, now aged 15, was diagnosed with autism and suffers with high anxiety, but when she left mainstream education began to have new urges to 'slap her legs" and later started to "jolt her head" and "hit herself."
At first, Michelle, 44, told the ECHO she panicked and thought something "may be wrong with Amelia's brain."
But mum Michelle, dad Brian and siblings Sam, Josh and Lilly-Ella soon discovered what the root of Amelia's urges were.
Michelle told the ECHO: "In November last year, it started with these head jolts and her wanting to slap her leg all the time.
"She’s been in Alt Bridge for about two weeks doing her transition and they reckon the transition has brought her Tourette's to light. But looking back at Amelia's life, certain things that she did was Tourette's and we didn't know because we couldn't get the help.
"When she moved to Alt Bridge it started with her shoulder shrugging, head jerking and after two days she started hitting herself, hitting me, she couldn't have a normal drink out of a normal cup because she’d either throw it over herself or throw it over someone nearer to her.
"She pulls my hair, she hits me, but she can't help it."
Tourette’s syndrome - a condition which causes a person to make involuntary sounds and movements called tics.
Michelle said: "We’d go on journeys to Chester Zoo and we’d have to tell Amelia we were going to Asda because at the time we didn't know she was getting tummy tics and it would make her vomit. We’d always have to take a change of clothes wherever we went, but obviously it was tics."
The first night Amelia came home from her new school, Michelle said she started whistling, "clucking like a chicken", turning her head, squinting her eyes and rolling her eyes.
Amelia got a diagnosis in under 12 months, but Michelle said day to day life for her is "horrendous."
Michelle said: "It's absolutely awful. She’s in a lot of pain all the time. She’s in a wheelchair at the moment because when we go out she falls to the floor quite a lot, she spins around, she walks backwards and she freezes.
"If we’re crossing the main road and I don't have hold of her she’ll just freeze. She looks at me and goes I cant move my legs. I have to encourage her and say don’t worry we’ll get there."
Michelle said Amelia can get tics in her sleep, has had to go to A&E on occasions when she's hit or kicked something too hard due to a tic and also suffers from 'tic attacks' - which causes her body to have numerous tics at once that can last "up to four hours.'
Michelle described it as like "an epileptic fit" and said the exhausting and painful attacks can be brought on when Amelia suppresses her tics when in an unfamiliar place or uncomfortable situation.
Michelle said: "She doesn't know what she's going to do. When we’re out shopping she’ll knock something or we’ll stand at the till and she’ll smack me on the head and the woman on the till will say 'aw that’s your mum you shouldn't be smacking your mum.'
"I just look at Amelia and smile because we know and I'll say to the lady she’s got Tourette's she cant help it."
Michelle said the family are "in crisis" and are having to find a bigger home so Amelia can have her own bedroom as her tics can mean she hits her younger sibling without meaning to.
She said Amelia's tics are often misunderstood as bad behaviour and wants to see more awareness for the condition.
Michelle said: "It looks funny but there’s another side of Tourette's that’s stressful and painful and I'd like people to research and look into it far greater than just what they see on the outside.
"I’d also like people to have compassion when they see someone with Tourette's, just have compassion for that person. It’s heart-breaking, I don’t wish it on anyone."
At the age of nine, Emma McNally's son, now aged 13, was diagnosed with Tourette’s syndrome - a condition which causes a person to make involuntary sounds and movements called tics.
Emma previously told the ECHO his physical tics can include blinking, eye rolling, grimacing, shoulder shrugging, jerking of the head or limbs and more, and usually begins during childhood.
Since her son was discharged from hospital in March last year because the neurologist left, Emma, from St Helens, said her family and others have been left "with no care" as there is no one in the area who can help treat him.
Emma said her family's experience and hearing that of others led to her launching a petition calling for more specialist support for children across the UK who have been diagnosed with Tourette’s Syndrome.
If the petition reaches 100,000 signatures, the issue will be debated in parliament.
Join our St Helens news, community and Facebook group here.
Michelle said: "There's not enough knowledge of Tourette's whatsoever anywhere.
"I’m desperate as well as other parents who are going through this. I am desperate for knowledge of this and I'm seriously desperate for help. I don't want to be a number. I want people to look and say that family is in crisis - because we are."
To sign the petition and find out more, click here.
Receive newsletters with the latest news, sport and what's on updates from the Liverpool ECHO by signing up here
