The inspirational County Durham mum tackling a marathon as part of a campaign to change the world for children with Tourette syndrome. PETER BARRON reports
SHE may be known as ‘Little Lou’ to family and friends but Louise Hodkinson has big ambitions when it comes to making the world a better place for her daughter and other children with Tourette syndrome.
Louise is a mum on a mission, and she can’t hold back tears of emotion as she talks passionately about her campaign to raise awareness of the neurological condition and remove barriers to diagnosis for children.
The Bafta-winning film, I Swear, is credited with significantly increasing public understanding of Tourette’s.
And Louise, whose nine-year-old daughter, Freya, has just been diagnosed after a "stressful, challenging, and deeply frustrating process" is determined to play her part in changing attitudes.
“I'd love it if I could bring about changes in the NHS, so that Tourette’s is taken more seriously – I’d really feel I’d achieved something,” she says from the family home in Weardale.
Louise’s sister, Claire, emailed after reading a feature I wrote last week about the challenges faced by CC, a young woman with Tourette’s, who attends a college, run by the North East Autism Society, at Aycliffe.
“My amazing sister has done so much. She's still fighting and I think what she’s doing is so important – could you please share her story?” asked Claire.
So, here it is…
Louise, who works in children and young people's services at Durham County Council, lives in Crook with her husband, Steven McTaggart, known as 'Tag'. They have two girls – Freya, nine, and Gracie, six – who were both were born through IVF treatment.
"We know what it took to get them here, it makes them extra-special, so we just want them to have the best lives," says Louise.
Freya hit all her early milestones. She's a sociable, popular, bubbly child, who recently won the regional championships for acro gymnastics and will compete at the national finals in May.
"She's such a happy, kind little girl with sunshine in her heart, and she makes us all feel better," says Louise.
However, when she was seven, Freya began sudden head-shakes, as if her hair was in her eyes.
"We didn't realise it was a tic, and there was no trigger, but it slowly progressed to becoming quite violent – she'd throw her arms and thrash her hips," recalls Louise.
"She learned to suppress her tics during her gymnastics but, as soon as she stopped, it was like the lid coming off a bottle of pop."
Freya went on to suffer mental fatigue and develop vocal tics, such as sniffing, snorting and humming. She found it hard to sit still and found it easier to stand up to do her work at school.
Excitement appeared to be a trigger, making Christmases "a nightmare".
As the tics became worse, a special clinic accepted Freya's referral to be assessed for Attention Deficit Hyperactivity Disorder (ADHD), but there was still no suggestion that it might be Tourette's.
Louise embarked on a 10-week course in cognitive behavioural therapy with the Child and Adolescent Mental Health Services, learning coping strategies for fear and anxiety, hoping they'd help with Freya's tics but they didn't.
"The fundamental problem is there's not enough awareness among GPs – we had to see three before we were taken seriously," she says.
The first GP said Freya would "grow out it", the second did some research but concluded there was no support in the North East due to a postcode lottery of care for children under 12, and the third finally referred the family to the University Hospital of North Durham for a Tourette's assessment.
The referral was made last December but it was going to be May, 2026, before Freya saw a paediatrician, and then there would be another wait to see a Tourette's specialist.
Frustrated that it was taking so long, Louise and Tag did their own research and found a clinic in Hull that could speed up the process.
Freya has now been diagnosed as having Tourette's but the family was mistakenly charged £200 because of a miscommunication.
"The money has been refunded but the stress of it all tarnished the experience," says Louise.
And, although Freya has been diagnosed, the glaring problem remains that there is no Tourette's therapy available on the NHS for children under 12 in the North East.
Thankfully, the family has received "outstanding support" from the Tourettes Action charity, as well as Bishop Auckland MP, Sam Rushworth, who put Louise in touch with the involvement team at the Integrated Care Board.
As a result, Freya has been made a case study to present to senior NHS managers to illustrate the need for greater support.
"Sam Rushworth was the first person who validated what we felt. Before then, we felt we weren't being listened to," says Louise.
The family has also had "fantastic" support from Hartside Primary Academy, where Freya's caring personality has led to her being made a peer mentor, supporting other children despite her own challenges.
Freya makes no secret of her condition and has even made her own lanyard with the message: I have tics, so if you are struggling with tics, just come and find me. I will be around.
The school put a support plan in place, including making teacher, Ava Acaster, Freya's 'trusted adult'. A special assembly was also arranged, using resources from Tourettes Action.
Louise has also been invited to speak on Tourette's at a meeting of Special Educational Needs Co-ordinators at the Advance Learning Partnership education trust.
Meanwhile, she's training hard for a marathon, from Gateshead to Crook, on April 26, using social media and posters to raise awareness of the condition along with funds for Tourettes Action. Freya is also doing her bit by making friendship bracelets that she sells for £1.
Family and friends will be joining Louise at different stages of the marathon, with Tag doing 10k, and Freya running the last mile with her mum.
"I want Freya to cross the finishing line first to symbolise what she's overcome and how hard she's battled," says Louise.
"We don't know what the future holds for Freya, we don't know how the Tourette's will develop, but we want her to have all the support we can give.
"Tourette's can be very dark and yet Freya has achieved so much. We've cried so many tears but we're still standing because we have a child who needs us.
"There's no-one medically who holds your hand and tells you what you need to do. We had to learn for ourselves, so we want to help other families avoid going what we've been through.
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"We're having to teach Freya to navigate the world because we know the world isn't necessarily going to understand her."
But, at just nine, Freya already has her own mature understanding of the need for change.
"Mum, we can make a difference – I really hope we can get help for other people with tics," she told Louise.
- To support Louise, go to justgiving.com and search for Little Lou's Big Run.
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