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Based on an interview with Rosie Cooper, Charlie’s mum (NSW, April 2022)

Charlie speaking

Charlie Cooper loves to exercise. He regularly participates in the martial art and combat sport, Jiu-Jitsu. He also likes the great outdoors. Being an apprentice landscape gardener is the ideal trade for him. Although he is still living at home with his family just now, he is saving hard to buy a property. Just 4 years ago, all of this seemed an impossible dream for Charlie who was diagnosed with TSC at 3½ months of age.

Charlie, the youngest child of Rosie and Dom, was diagnosed with TSC after they noticed him suffering infantile spasms. Despite many tests, baby Charlie continued to have the spasms and he was put on several epilepsy medications. Luckily, Sabril worked for him and from the age of 12 to 18 months Charlie was seizure free. However, this was just a brief respite and over many years Charlie would continue to have TSC-related seizures. Medications would help for a while and then the seizures would start again. His medication dosage would be increased and again, for a while, the seizures would be controlled. For Charlie and his family, it felt as though they were on an endless rollercoaster. And, by the time he was 16, the dosage of the meds was so high that, half an hour after a dose, Charlie would be incredibly drowsy.

Throughout Charlie’s school years this pattern of seizures and medication dosage change, some seizure control was repeated time and time again. The outdoors-loving, wanting to be physically active Charlie longed to exercise and play footy like his friends. But it seemed that every time he exercised, he’d have another seizure – he couldn’t even join Nippers due to the risk of a seizure.

Charlie and his family live near beachside Cronulla, about 25 kilometres south of Sydney. When he transitioned from paediatric care, he was transferred under the care of Dr Chong Wong, a neurologist and epileptologist at Westmead Hospital in western Sydney. It is over an hour’s drive for the family, but Westmead has a well-established multidisciplinary epilepsy surgical unit and adult TSC clinic. As his mum Rosie says, ‘You just travel to wherever you can get someone who can give your child the best shot at things.’

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Dr Wong undertook a new batch of tests and even sent Charlie to Melbourne. At one point he was admitted to Westmead and had to spend 2 weeks in bed as Dr Wong and his team completed stereotactic EEG (SEEG) a technique which Dr Wong had brought to Australia in 2012. SEEG is minimally invasive (it’s burr hole surgery and Charlie has had 18 of these) and it helps to identify which of the tubers in the brain is responsible for seizure onset. Once that is known, it allows for selective surgical resection of the epileptogenic tubers.

While in hospital, Charlie was taken off all his medications and, as a result, had some of the biggest seizures of his life. Rosie admits it was quite frightening but says that they all tried to stay as positive as possible.

Charlie says that the surgery and no longer having seizures have literally transformed his life.
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After what seemed like endless rounds of testing and hours and hours of analysis, Dr Wong and his team recommended surgery, with a 60% chance of seizure freedom. The surgery would be performed by Dr Dexter.

It was while the Cooper family were in the UK to attend a wedding that they received news that Charlie’s big operation would take place on 16 October 2017 – 2 days after Charlie’s eighteenth birthday.

Rosie admits that the day of the surgery was one of the most stressful of her life. It wasn’t helped by the fact that Charlie couldn’t give a thumbs up to his family when he came out of the operating room and his family initially thought he might have lost the use of his hand. The next morning, however, Charlie was able to smile and give them the thumbs up they longed to see.

Charlie is now 22 years old. In the 4 years since his surgery, he has not had a single seizure.  And, whilst he is still on medication, the levels have been drastically reduced and no longer make him sleepy. In fact, because he is seizure free, his biggest problem now is remembering to take the meds!

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Over the years Charlie and his family had spent many hours debating what Charlie would do when he left school as his frequent seizures created a risk of danger in so many of the options they considered. He knew he wanted to learn a trade and he wanted to do something physical. It was Dr Wong who suggested he should consider landscaping.

Since his surgery Charlie has had a brain MRI and all is well. He is also keeping up with his other TSC surveillance and has regular check-ups with his urologist, cardiologist and ophthalmologist.

Charlie was starting to lose some peripheral vision which was thought to be due to his extended use of sabril so it was a relief to be able to stop taking that medication altogether. This meant that he was recently able to clear some pretty thorough eye tests and he went on to pass his driving test.

Charlie says that the surgery and no longer having seizures have literally transformed his life. Rosie jokes that his increased independence since his surgery, and particularly since he got a car and can drive himself, has transformed her life too.

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The Cooper family feel so lucky that Charlie’s surgery has had this positive outcome. They are so glad they put their faith in the doctors at Westmead. As Rosie says, ‘It was easy really to trust them. They put so much work into Charlie’s case and spent so many hours testing and analysing him.’

Charlie can do so many things that, before his surgery, were just an impossible dream. Rosie says the level of independence he has achieved since the surgery is staggering. This life-changing surgery has really enabled him to live his best possible life. ‘I can’t thank Dr Chong Wong, his neurology team and Dr Mark Dexter enough for taking such great care of Charlie. Without all their hard work, Charlie would not be the independent young man that he is today.’

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