Bereaved dad's marathon tribute to son who died of rare brain disorder

Karl Sehmbi (left) with son Arun, who died in 2018 after a long struggle with a rare brain disorder

Karl Sehmbi (left) with son Arun, who died in 2018 - Credit: Karl Sehmbi

An Ilford man is walking a marathon in honour of his son who died from a rare neurological disorder. 

Arun Sehmbi, 21, died in 2018 after a ten-year battle with Batten disease, a disorder so rare it was only diagnosed six months before his death. 

The deterioration of Arun’s brain matter was confirmed by an MRI scan in 2011 and for many years he received care from Richard House Children’s Hospice and Great Ormond Street Hospital. 

This month his father Karl will be raising money for the hospice, which he described as “a safe haven” for his family, by walking 26 miles. 

Richard House provides a range of therapies and specialist clinical care to young people and relies on donors - this year it must raise £4.2 million to continue its work. 



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