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Podcast: Hayley’s Story with Lily’s Optic Pathway Glioma

On Aunty M Brain Tumours Talk Show, Hayley shares the story of her granddaughter, Lily. Lily was diagnosed with an optic pathway glioma when she was one year old. Hayley doesn’t want a parent or grandparent to go through what she has had to go through.

Hayley’s Story with Lily’s Optic Pathway Glioma

Symptoms and Diagnosis:

  • Lily was born in November 2016, a robust baby weighing 9 pounds and 4 ounces. However, it wasn’t long before they noticed Lily wasn’t feeding well, leading to concerns about her health. Misdiagnosed as lactose intolerant, her condition worsened, and her weight plummeted.
  • After numerous doctor visits and being dismissed as a fussy eater, Lily’s condition reached a critical point. A private paediatrician’s intervention led to urgent hospital admission, where an MRI, prompted by the observance of an unusual eye flicker, revealed an optic pathway glioma along with Diencephalic syndrome, explaining her perpetual hyperactivity and euphoria.

The Battle and Treatment:

  • Great Ormond Street Hospital stepped in, outlining a treatment plan initially thought to last a year. Yet, it extended to four years and involved eight different types of chemotherapy due to the tumour’s resilience. The journey was marked by allergic reactions, anaphylactic shocks, and significant physical and emotional challenges for Lily and her family.

Family Impact and Support:

  • Hayley reflects on the profound impact of Lily’s condition on the family, emphasizing the struggle of balancing concern with maintaining a non-intrusive stance. The story sheds light on the critical role of charities and the community in providing support and resources, significantly aiding Lily’s ongoing battle.

Lily’s Life Now:

  • Despite her severe visual impairments and the lingering effects of treatment, Lily leads an active and engaging life. She attends school, participates in gymnastics, and enjoys playing golf, showcasing remarkable resilience and determination.

Charity Work and Advocacy:

  • Hayley shares her journey of becoming deeply involved in charity work, from fundraising efforts for Great Ormond Street Hospital to becoming a trustee for the Brain Tumour Charity. Her transition from a high-profile career to focusing on charitable endeavours underscores a commitment to making a difference in the lives of those affected by cancer, particularly brain tumours.

It’s A No-Brainer Campaign:

  • Hayley participates in the “It’s a No-Brainer” campaign, advocating for a national brain tumour strategy to ensure comprehensive care, research, and treatment access for all affected by brain tumours in the UK.

Resources Mentioned:

Contact Hayley on Instagram: HERE

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