Local school-girl Freya Hodkinson has knocked on the door of No. 10 Downing Street and hand-delivered a letter to the Prime Minister as part of her campaign to raise awareness of Tourette syndrome.
The Crook-based family visited Parliament on Monday 1st June, continuing their efforts to improve awareness, understanding and support for people living with Tourette syndrome. Freya, accompanied by her younger sister Gracie, mam Louise, dad Steven and the CEO of Tourette’s Action, Emma McNally, were hosted by Sam Rushworth MP, who has supported the family’s journey since they first met at a constituency surgery last year.
During their visit, the family toured the Houses of Parliament and discussed the progress of their campaign over lunch on the terrace. Freya had the opportunity to walk down Whitehall and hand-deliver a letter she wrote to the Prime Minister at No. 10 Downing Street.
The visit provided a chance to highlight the challenges faced by people living with Tourette syndrome, including the need for greater public awareness, improved access to specialist healthcare services, and better support for both children and parents navigating the condition.
In her letter to the Prime Minister, Freya described how she experienced “involuntary tics for two years” before receiving a diagnosis of Tourette syndrome. She wrote about the physical and emotional impact of her condition and asked the Prime Minister to imagine suppressing a sneeze to understand what living with tics feels like.
Freya also highlighted the difficulties she has faced accessing support, noting that Tourette syndrome often occurs alongside ADHD and autism. In her letter, she wrote: “Most people don’t know much about my condition, not even doctors,” and added that “we all deserve to live in a world of understanding.”
Freya’s mother, Louise, has become a passionate advocate for children and families living with neurological disorders. Motivated by the challenges she faced securing a diagnosis and support for Freya, she has worked tirelessly to raise awareness and campaign for therapies to be made available.
Her efforts include completing a marathon that raised thousands of pounds for the charity Tourette’s Action, cheered on by family, friends and Sam as she crossed the finish line in Crook. Through her fundraising and campaigning, Louise has helped shine a light on the experiences of families affected by Tourette syndrome while championing improvements in care, understanding and support.
Louise Hodkinson said:
“Every child deserves to be understood and supported, and we hope that by sharing our story we can help improve services and awareness for others.
“Our campaign is all about educating people, helping families find the right pathways to support, and improving understanding among the general public. At the moment there is a postcode lottery when it comes to care and services, which means Freya cannot access support on the NHS that would be available in other areas.
“Small changes in healthcare and education could make a huge difference. I’m so proud that my Freya was able to take our message directly to No. 10 with us all by her side and be a voice for children living with involuntary tics. Young people like Freya are helping to change attitudes and improve understanding for the better.”
Sam Rushworth MP said:
“It was a joy to welcome Freya, Louise and their family to Parliament. Since first meeting them, I have seen how they have turned their experiences into positive action through campaigning, fundraising and raising awareness.
“Hearing directly from Freya and Louise about the challenges they have faced was deeply moving. Seeing Freya personally deliver a letter she had written to Downing Street, setting out her experiences and calling for change, was a moment I won’t forget.
“What makes Freya’s campaign so special is that she is not only speaking up for herself, but for other young people living with Tourette syndrome who deserve better support. Her willingness to share her story is helping challenge misconceptions and improve understanding, while Louise’s determination continues to drive meaningful change.
“There is still more work to do to ensure families can access the support they need, and I am grateful to them for bringing these important issues to Parliament. I have made it clear that I will support them every step of the way.”
Emma McNally, Chief Executive Officer of Tourette’s Action, who accompanied the visit, said:
“People with Tourette syndrome do not choose to tic. These are involuntary movements and sounds that they have no control over. But the public does have a choice in how they respond.
“Do we react with judgement, or do we choose empathy? Do we dismiss what we don’t understand, or do we take the time to learn more? Misunderstanding, stigma and isolation remain daily challenges for many people with Tourette syndrome. That’s why raising awareness and improving understanding is so important.”
