Barnaby's story
Epilepsy
Barnaby had seemed a happy, healthy baby, but when he was around five weeks old, his parents began to notice quick, unusual eye movements when he woke up or was sleepy. Then, when he was eight weeks old, he experienced an episode so frightening they took him straight to hospital.
That morning, just after waking, Barnaby had a series of back-to-back seizures. “They looked so severe, and he started crying out of them,” recalls his mum, Charlotte.
By the time they arrived at hospital, Barnaby appeared to be fine – but his parents had video footage that told a very different story. “They took one look and admitted him immediately for urgent tests,” says Charlotte.
Barnaby was diagnosed with infantile spasms, a form of epilepsy that begins within the first years of life. He began medication straight away and it initially seemed to work. He seemed to be developing well and began to say his first words. But within six months, the spasms returned with a vengeance – and he began to have atonic drop seizures. These cause a sudden loss of muscle tone, making him go limp and fall. Barnaby also began to lose early skills he'd previously mastered.
He could no longer say ‘mama’ or wave and point. It just vanished”
Barnaby's family now know that his seizures cause damage to his brain, affecting his memory. MRI scans have shown he has Focal Cortical Dysplasia (FCD) in his left frontal lobe. This is an area of his brain that has not formed properly and means that surgery may be the only way of ever fully gaining control of his seizures. The location of the FCD means Barnaby also has weakness on the right side of his body, affecting his balance and mobility.
Keeping Barnaby stable requires five different medicines, twice a day, plus a sedative so he can sleep at night. This has reduced his seizure activity to around 30-50 a day. Barnaby also has emergency medicines to use if an episode of seizures continues beyond a certain time-frame – the duration of which has been repeatedly extended.
“We are on the maximum doses of everything now, so there’s no room left for tailoring or reducing his medications,” explains Charlotte.
In the long-term, the medications Barnaby needs also come with the risk of serious side effects. He has to have regular blood tests to check his organs due to the risk of heart, kidney or liver damage. One of his medicines can also affect peripheral vision, so this is also monitored.
We are still fighting so many unknowns. Caring for Barnaby can be very scary and is a huge responsibility”
Help fund future breakthroughs
Barney experiences a mixture of three types of seizures – spasms when he wakes up from sleep, absences which can happen throughout the day and the drop seizures, when he falls without warning.
For a toddler who wants his freedom, his epilepsy results in regular injuries. “He’s chipped his tooth, split his lips multiple times,” says Charlotte. “We’ve padded our home as much as possible and he sleeps in a 'safe space bed'. He wears a protective helmet most of the day and now uses a walker frame out and about. We’ve had to adapt to his way of living,” says Charlotte.
In the UK, around 64,000 babies, children and young people under 18 have epilepsy. Action Medical Research has a proud track record of funding studies to help children with epilepsy and continues to support a range of research into epilepsy.
Barnaby has taken part in a study that followed babies with early-onset epilepsy – work that Action funding is now helping to continue in children aged three to five.
The charity is also funding research to test if an advanced new scanning technique can improve the detection of focal cortical dysplasia in children. This could offer more children the chance of potentially life-changing surgery.
We would love to understand more about why Barnaby has the problems he has. He is the happiest and most resilient little boy, but it’s not a normal life – we are so governed by his epilepsy.”
