Children's Epilepsy and Brain Tumour Research

Our daughter Immie was diagnosed with brain damage when she was 1 year old and currently lives with two brain tumours, severe Epilepsy and Cerebral Palsy. Over the past 2 years, Immie has spent a significant amount of time in The Great North Children’s Hospital who continue to provide an amazing service and our family has also been supported by Oscar’s Paediatric Brain Tumour Charity. We would like to raise awareness of her conditions and raise money for both charities to assist with research and support to other families like ours.

Immie’s Dad, Dan, and his friend, Chris, have decided to run ‘The Wall’, a 70-mile ultra-marathon along Hadrian’s Wall from Carlisle to Newcastle. The event has to be completed within 26 hours and is scheduled for 15/16 June 2024. Racing as ‘Team Immie’, Dan and Chris aim to raise £5000 to be split between the Great North Children’s Hospital and Oscar’s. Please donate if you can towards these two wonderful causes and to supporting families in similar very difficult situations.

Immies Story:

Immie was born two weeks into the first Covid lockdown in April 2020. Immie’s mother, Megan, expressed concerns at 3 and 10 days old over the phone to the health visitor that Immie’s right hand was in a fist was tight shut.

The family were passed back and forth between health visitor and GP for a year, not being able to see either one before Megan refused to leave the GP until Immie was examined.

Immie was immediately referred to Ipswich hospital and seen the same week. Cerebral palsy was suspected, but the MRI scan that was conducted showed that Immie had a brain condition called Polymicrogyria, meaning the left side of her brain is smaller than the right and the folds on the outside of her brain aren’t as they should be. The condition is linked with Epilepsy, Autism and Learning Difficulties amongst others. The family moved back to Newcastle in November 2021 to provide a stable location for Immie’s medical care, education, to be near family for support and to be close to the Great North Children’s Hospital.

In December, Immie had her first seizure, and her second a few weeks later, both resulting in hospital stays and a diagnosis of Epilepsy.

In June 2022, Immie had a severe tonic-clinic seizure which the doctors were unable to stop. After five different medications and four hours in the seizure, the decision was made to put her into an induced coma, put on a ventilator and transferred to the Paediatric Intensive Care Unit (PICU). The medical staff suspected that Immie had Meningitis which brought on the seizure and so Immie was taken for a MRI before a lumber puncture which would extract fluid from her spine to check for the infection. The lumber puncture found a Pneumococcal infection from the meningitis family, needing 10 days of IV antibiotics however the MRI also` found an unrelated brain tumour.

This shattered the hearts of everyone who knew Immie. After the course of antibiotics was finished, Immie had emergency surgery to remove the tumour which was found to be an Atypical Grade 2 Meningioma, rarely found in children.

After surgery, the MRI to check the tumour was fully removed found another potential tumour. She recovered incredibly well, woke up in PICU singing ‘Wind The Bobbin Up’ and -to her oncology nurse’s horror- was wanting to be immediately back on her scuttle bug!

Immie had an MRI 3 months later, in October 2022, to check the growth of the tumours and found that the tumour which had been removed appeared to be growing back. In April 2024 genetic testing found Immie to have an extremely rare tumour condition, NF2 meaning she is extremely likely to have more tumours in the future, particularly on nerves which may affect her hearing, potentially resulting in total hearing loss. Immie has MRI scans every few months which are currently showing both tumours to be stable, this is as positive as we can hope for and pray it continues. May 2024 Immie needed another hospital admission and was having hundreds of seizures per day, spiralling further to 300, to the point she was in status meaning her brain was seizing none stop. Her condition was deteriorating drastically and was no longer able to walk, sit or swallow. Rescue medications along with up to 7 daily anti epileptic medications and high steroids were not working and the decision was made for her to have emergency brain surgery to disconnect half of her brain to stop her seizures, a functional hemispherectomy with a specialist team in Liverpool. 6 weeks post surgery Immie is now able to walk, talk and has only had 6 seizures.

Immie’s life involves around 3.6 scheduled hospital appointments a month, 88 nights in hospital in 2024 so far, 12 medication doses a day and the constant worry of more seizures requiring time in hospital.

It also involves a lot of smiles, two wonderful parents, a supportive family who utterly adore her and fun days out with friends. Despite all she has dealt with and continues to deal with, she exceeds all expectations, is the happiest girl, and her family will do anything possible to keep it that way.