At six years old our brave ambassador Brooke started to have what her parents describe as 'funny turns' while waiting for a hospital appointment
At six years old our brave ambassador Brooke started to have what her parents describe as funny turns while waiting for a hospital appointment. After a 24 hour stay in hospital for an EEG, Brooke was diagnosed as having gelastic seizures and she had 16 of these in the 24hours she was monitored. A MRI confirmed a diagnosis of a Hypothalamic Hamartoma (HH)– a benign brain tumour right in the center of her brain which was formed at five weeks gestation, so this had been there her whole life. It was now understood those funny turns were actually seizures along with the spontaneous giggling followed by a bit of a cry and a sleep since she was a baby.
Life changed rapidly for Brooke and her family as they adjusted to supporting a child with a major health condition.
Brooke’s seizures developed very quickly from her initial hospital visits, and by the time she had the full diagnosis she was having multiple seizures of varying degrees every day. She also suffered from two other common symptoms of a HH, uncontrollable rages and the loss of her cognitive skills. At the end of year two at school she was an above average student, but by the start of year three she was back reading and writing like a new entrant.
In January 2010, Brooke and family travelled to the Royals Children’s hospital in Melbourne to have the first of two very long and difficult surgeries to remove the tumour. During the first surgery they removed 80% of the tumour and hoped this would be enough to stop her seizures and control her other symptoms. Thankfully, the rage disappeared and her cognitive skills all came back. Brooke had to catch up on the year she effectively missed due to large numbers of seizures and dealing with the tiredness that occurred after these. She was amazing and did this very quickly and even started playing netball five months after this surgery.
Unfortunately, the seizures returned and after trying many different medications Brooke had to head back for a second operation in 2015 when she was aged 13 and was at the start of year nine at college. Again they could not remove all of the tumour due to it being too deep in the brain and the high risk of impacting her short and long term memory.
Since this surgery Brooke has continued to have 1-3 seizures a day and we still experiment with different medication under the guidance of her Neurologist Lynette Sadlier. Brooke takes a full and active part in all aspects of life and school and likes to be treated just like anyone else. At times she has to manage her tiredness and deal with seizures occurring while she is in class or playing sport.
Brooke mum Shona says; “We are so fortunate to have Lynette as our Neurologist as she is a leader in Epilepsy research and is supported by Cure Kids. This has meant we have benefitted from her working relationships with the world leading Neurologists in Melbourne who have developed the surgery which not only changed Brooke’s life but other HH suffers all over the world.
We are not sure where things will go with Brooke’s seizures but we are preparing her to manage her life in the future. She knows she will never drive like her friends and has to use strategies to assist her with her short term memory issues. But Brooke is determined to have a life just like her sisters and friends and would love to have a career where she can support children also dealing with medical conditions.”
Brooke lives in Wellington with her Mum, Dad and two older sisters.
Cure Kids is currently funding Professor Lynette Sadleir in her quest to find the genes responsible for childhood epilepsies. Click here to read more about the research.