28th July 2023

Millie’s Courageous Journey: Overcoming Epilepsy and Rasmussen Encephalitis

In April 2021, Millie’s life took an unexpected turn when she experienced her first seizure. Little did she know this would begin a challenging journey filled with uncertainties, medical tests, and numerous hospital visits. Millie’s story is a testament to the power of resilience, the importance of advocacy, and the incredible impact that community support can have on a family in need.

A Battle with Epilepsy

By June 2021, Millie underwent an EEG, which confirmed her diagnosis of epilepsy. She started her journey with anti-seizure medication, hoping to regain control over her life. However, Millie soon began experiencing severe balance issues and persistent headaches, raising concerns for her well-being. Her dedicated caregivers pleaded with doctors for three months to conduct an MRI and consider changing her medication to find answers and provide the best possible care for Millie.

Unveiling the Mystery

Finally, in early December, Millie underwent her first MRI. As a brave five-year-old, the experience of being awake during the procedure was undoubtedly frightening. Despite the challenges, the obtained images revealed the presence of growth in her brain. However, the nature of this growth remained uncertain. To gain more clarity, another MRI under general anaesthesia was scheduled.

In January 2022, Millie underwent her second MRI, and the results brought a glimmer of hope. The previously detected growth turned out to be inflammation that had reduced size. The doctor expressed satisfaction with the progress, assuring Millie’s family that it would likely disappear entirely within another month.

A Bumpy Road and a Rare Diagnosis

April 2022 marked the first anniversary of Millie’s first seizure, but unfortunately, it brought more challenges. Half of Millie’s brain had stopped functioning correctly, leading to an emergency. An EEG confirmed the distressing reality, and she underwent an emergency MRI and lumbar puncture. The MRI revealed the return of inflammation at its full size. Millie’s resilient spirit shone through as she received high doses of anti-seizure medication and steroids, ultimately recovering and returning to her usual self. After a two-week hospital stay, she was discharged with additional anti-seizure medicines, bringing the total to three medications. Millie’s seizures persisted, necessitating constant medication adjustments during her medical reviews.

September 2022 brought an hour-long seizure, which required intervention through intubation. Another MRI and lumbar puncture were conducted, indicating the absence of inflammation but the presence of scarring on Millie’s brain. After a week-long hospital stay, Millie returned, and her medication was modified to address her changing needs.

The Path to Recovery

October 2022 revealed that Millie would require surgery to remove the scarring from her brain. However, due to an extensive waiting list, the family explored the possibility of going private, recognizing the financial strain it would impose. Millie, now six years old, longs for an everyday life free from the shackles of her condition. Unfortunately, she continues to experience seizures, with 13 episodes this month alone. The family is deeply grateful for donations contributing to Millie’s well-being, offering hope for a healthier and happier future.

An Update and a New Beginning

An update on Millie’s journey reveals a new diagnosis—Rasmussen encephalitis, a rare form of epilepsy where inflammation affects one side of the brain. Millie underwent a life-changing hemispherectomy at seven, a surgical procedure that disconnected half of her brain. The surgery lasted an astounding 16 hours, with Millie facing additional challenges, such as a collapsed lung. However, she spent a week in the Pediatric Intensive Care Unit and showed remarkable resilience during her recovery.

Millie faced limited mobility on her proper side post-surgery, embarking on intensive rehabilitation to regain movement. As her strength grows, doctors have begun discharge meetings to ensure her safe transition from the hospital to home. To accommodate Millie’s needs, the local council has agreed to initiate an extension on the family’s property if a suitable housing option does not become available within 18 months.

A Call for Support

As a family, they express immense gratitude for the support and generosity shown by the community thus far. The funds collected, and additional donations will be instrumental in addressing the urgent housing situation and preparing for Millie’s eventual homecoming. Each contribution, no matter the size, significantly impacts Millie’s journey to a better quality of life.


Millie’s journey is one of resilience, perseverance, and strength that can be found in the support of a caring community. While facing the challenges of epilepsy and Rasmussen encephalitis, Millie and her family have shown unwavering determination. Together, let us rally behind Millie, providing the financial and emotional support needed to create a brighter future for this incredible young girl.

Please click the link below to visit our GoFundMe page and learn more about Millie’s courageous journey. Share it with your friends, spread the word, and together let’s make a positive change in Millie’s life.

Paige Allison