Family running to support Rainbows

An eight-year-old boy with a rare brain condition is taking on a challenge to raise funds for Rainbows.

Nuh Kharodia was diagnosed with Alexander Disease – an extremely rare, usually progressive, neurological disorder – when he was 19-months-old.  For the last seven years, he has been supported by our hospice. 

Before his diagnosis, his mum Sahara said her son was fit and healthy. “He would have little setbacks which we thought were some kind of delayed development,” she said. “He started having seizures so we took him to hospital. While there, he suffered multiple seizures and lost the ability to walk, talk, eat or even sit up unaided in the space of a couple of hours.”

Nuh needs round the clock care and his family began getting help from us seven years ago. Now Nuh and Sahara are taking on our Virtual 5k as a thank you. 

We are encouraging our supporters to do our Virtual 5k their own way, whether that’s running, skipping, hopping, dancing or swimming the distance. It can be a dog walk, a run or even a dance in the kitchen.

“Rainbows is so supportive, helpful, understanding, caring and all the staff we come across are so friendly and always willing to help and put a smile on all our faces, including his siblings Rashaad (four) and two-year-old Zayd,” said Sahara. “Staff really try to help ease any burden, provide advice and help us wherever they can.

“We shall do some running, walking, skipping and dancing but most importantly, raising funds for Rainbows. We also want to create awareness of the hospice so others can help fundraise as well as understanding issues children and carers can face. It would be great if other people signed up too.”

Everyone who takes part in the challenge, which must be completed by the end of March, will receive a medal. Entry is £20.

Nancy Lillington, Rainbows’ Events Manager, said: “We are really grateful to Sahara and Nuh for taking on this challenge to help families who are in the same situation as them. We want our supporters to get involved and help spread the smiles as they complete the miles. Whether this is done in one go or over multiple days is completely up to each individual.

“The medals have kindly been donated to us, so 100% of entry fees will go towards the vital work we do here at the hospice, supporting children and young people with a life-limiting condition and their families. We’d love it, if people would also raise money while taking part in the challenge too.

“For those who raise £100 or more, we’ll send you one of our running tops which you can wear with pride while taking part.”

For more information visit or contact Nancy on 01509 638068 or email [email protected]