I’ll help save other children with rare form of epilepsy, says mum of tragic tot Max (From Bournemouth Echo)
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I’ll help save other children with rare form of epilepsy, says mum of tragic tot Max
THE mum of a little boy who died just weeks before his second birthday of a rare form of epilepsy will help save other children with the condition.
Following the death of Max Miller Prior, who suffered a Sudden Unexpected Death in Epilepsy (SUDEP) in 2011, mum Gail created fundraising group TeamMAX.
And just two years later, the group have achieved their aim after researchers at UCL’s Institute of Neurology confirmed they will investigate the type of epilepsy responsible for Max’s death.
Gail, who lives in Corfe Mullen, said: “It’s absolutely amazing news.
“That has always been our aim, so we’re delighted. But we’re definitely not going to stop now – the money we’ve raised already this year, which comes to about £4,500, will go to the children’s unit at Poole Hospital.”
Max, who suffered with Dravet syndrome, was just 22 months old when he died.
The tot had “tonic clonic” seizures and would lose consciousness – but tragically would have outgrown the condition at the age of seven.
TeamMAX raised more than £30,000 to fund the study by researchers.
Gail, who gave birth to baby daughter Grace on August 8, said: “Max was an absolutely delightful little chap, and you would never know he was poorly if you met him.
“Out of the tragedy of his death, positive things are happening for other children, and we’re proud to fund this research in his memory.”
Dravet syndrome is resistant to most epilepsy medicines, and children with the condition are at an increased risk of premature death.
The research will determine if the gene in the brain responsible for the syndrome also causes problems with the heart, particularly when children are unwell, as it is suggested that these problems could be the cause of the increased risk of SUDEP.
Margaret Rawnsley, research officer at Epilepsy Action, said: “We would like to thank Gail for making this possible. It is a fantastic tribute to Max.”
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