11-Year-Old

Grace Miller’s Battle Against

Trigeminal Neuralgia

Children and Trigeminal Neuralgia and Facial Pain

Dear fiends and members ,

I wanted to share a remarkable story of Grace Miller.

It’s very rare for young children to be diagnosed with trigeminal neuralgia, a condition primarily known for affecting adults. Yet, as members of the Trigeminal Neuralgia Association (TNA), we are deeply moved by the case of Grace Miller, an 11-year-old from Monifieth, Scotland, whose battle with this debilitating disease highlights its unpredictability and severity.

Grace’s ordeal with trigeminal neuralgia began in early 2022 with a tingling sensation below her right eye, which rapidly escalated into severe, disruptive attacks.

Her father, Garry Miller, describes these episodes as

“electric shock-type attacks,”

highlighting the extreme nature of her pain:

“The pain is so severe that even crying makes it worse,” he notes.

This statement not only paints a vivid picture of Grace’s daily struggles but also emphasises the complexities involved in diagnosing and managing this condition in children.

Garry’s reflection on their family’s experience points to the broader implications for support:

“All we can do is be there for her, sit beside her and hold her hand,” he says.

Such simple yet profound support is vital, reflecting the broader role that our community can play in providing comfort to those in need.

Grace’s story I know will have a huge impact within our charity especially by shared experiences, such as those of Molly Dyer, who underwent Microvascular Decompression (MVD) surgery as a teenager. She has been a source of inspiration, having addressed our conference in London, underscoring the resilience needed to fight this condition.

Grace has responded to her challenges with remarkable initiative, organising a fundraiser at her school.

She has been making friendship bracelets to raise funds for us at Trigeminal Neuralgia Association UK, her father proudly shares. This act of solidarity from such a young member of our community is not just inspiring; it serves as a call to action for all of us.

Expanding Our Support: The Young Person’s Gift Pack

In light of Grace’s heroic efforts, we are motivated to do more for our younger members. We are introducing a ‘Young Person’s Gift Pack,’ designed to provide comfort and resources specifically tailored to our paediatric members. This pack will include educational materials about TN, and personalised messages of support from our community, ensuring that young sufferers like Grace and her family feel supported and connected.

Our Joint chairs Mr Sinan Barazi and Dr Giorgio lambru have updated our young people’s guide for children with TN. Please click the button here

TNFP: What We Need to Do as a Charity

Grace’s story reminds us why our work is so crucial, and the difference we can make in the lives of those affected by TN and facial pain, irrespective of their age. As we unite to increase our fundraising activities, expand our research into TN, and ensure that these families receive the resources and community support they critically need, Grace’s upcoming school event is very moving I personally feel truly humbled by her incredible efforts.

TNFP aims to foster a future where no child has to endure such intense pain alone.

Warmest regards

Aneeta

Aneeta Prem MBE CEO