A schoolgirl with severe Tourette’s syndrome is fundraising for a treatment her family says should be readily available on the NHS after being inspired by the critically acclaimed film I Swear .
Mili (Milena) Tuma, 12, from Elgin, was diagnosed with Tourette’s at the age of six after years of escalating tics that began with excessive blinking as a tot and progressed to full-body movements and vocal outbursts.
The Elgin Academy pupil is cycling 100 miles to buy a Neupulse device – a non-invasive treatment that has been shown to reduce tic severity in people with the neurological condition. It is not yet available for free on the NHS.
Mum Carys Wightman, told the Record: “It is so frustrating Neupulse isn’t available on the NHS. So many people have told us it has been life-changing, and it would be hugely beneficial if it could be prescribed and accessible.
“As a parent you just want your child to be happy but life is very challenging for her. This could make the difference.
“However, a lack of knowledge about it and the financial strain are limiting options for treating Tourette’s.
“If there’s a safe, non-invasive treatment that could improve quality of life, not just for Mili but for families like ours, surely that’s what the NHS should be investing in. It shouldn’t depend on what families can afford.
“Children shouldn’t have to fundraise to access something that could help them.”
View 4 ImagesMum Carys and Mili.
Mili’s Tourette’s affects every aspect of her life.
“People think it’s just funny sounds and funny-looking jerks, but it physically hurts her,” Carys explained.
“She’s currently covered in bruises. She was cycling recently, ticced, swerved into a lamppost and came off her bike.
“Sometimes I have to spoon-feed her because she physically can’t get food from the plate to her mouth.
“She has physiotherapy because of the muscle pain caused by her tics.
“It affects her entire life. She’s terrified of getting on a plane, going to the cinema, trying new experiences. Things most people take for granted.”
View 4 ImagesLast summer, just before starting secondary school, Mili developed coprolalia – involuntary swearing tics – that have made life even more challenging.
“The coprolalia came completely out of nowhere,” Carys added.
“She’s a child I’d never heard swear before. It goes against everything she is. But suddenly she was shouting things she couldn’t control.
“The hardest part is other people’s reactions. Children think it’s funny. People stare in supermarkets, restaurants and school. It’s shocking for people who don’t understand, and it’s caused us a lot of distress.”
Mili has tried several medications, but they have not been effective.
View 4 ImagesCarys and Mili
“One made her so sleepy she couldn’t function. It essentially paused her life for months,” she said.
“Another helped in some ways but came with other side effects. We’ve been desperate to find another option that actually works.”
When Carys and her husband Alex watched I Swear , based on John Davidson’s true-life story, he was using the Neupulse device.
Although the film was rated 15, Mili later watched it after hearing classmates talk about it – and it had a big impact on her.
“Mili has been so inspired by John’s story,” Carys said.
“For the first time she saw someone with Tourette’s speaking openly about it.
View 4 ImagesJohn Davidson and Robert Aramayo
“It gave her hope she could have more independence and live a fulfiling life despite the difficulties of living with Tourette’s.
“John has encouraged her to not simply be passive about her condition. We can also see the huge awareness it’s created in our community just in the last few months.
“The film also left her wondering ‘Where can I get one of these devices? We’d never heard about it before.'”
After discovering the £500 Neupulse device was not available on the NHS, Mili was inspired by John to take action herself. She’s taking on a 100-mile cycle challenge to pay for the device and fundraise for Tourette’s Scotland to help others.
“She’s at an age where she wants to go out with friends and experience life without constantly worrying about reactions,” her mum said.
“She just wants to be Mili. I’m so proud of her for taking her future into her hands and wanting to help others.”
You can donate to Mili’s fundraiser, here.
Andrena Duncan, Chair of Tourette Scotland, said: “Mili’s achievement is about so much more than fundraising. Her willingness to share her journey alone, has highlighted the challenges faced by those living with Tourette Syndrome.
“This has not been an easy challenge for her and she has shown remarkable determination throughout. She should be very proud of herself and what she has accomplished.
“On behalf of everyone at Tourette Scotland we would like to thank her for her incredible support raising funds and awareness. We wish Mili the best of luck as she enters the final stages of her 100 mile cycle.”
Article continues below
A Scottish Government spokesperson said: “The Scottish Government is committed to ensuring that people living with conditions like Tourette’s have access to high quality care and support, and benefit from healthcare services that are safe, effective and person-centred.”
NHS Scotland has been contacted for comment.
Get Daily Record Premium for just £1 per month in exclusive offer to celebrate the world cup. Click HERE.