News
Colchester police officer running London Marathon for friend’s two children with rare syndrome
29 Aug 2023
A Colchester policeman is running the London Marathon to raise funds for a friend’s two children with a rare syndrome.
James Harvey, 41, from West Bergholt, is running the famous race for Oscar Munson, aged six, and his sister Mary, aged eight.
James, whose ten year old son George has autism and ADHD, met Oscar and Mary’s dad Thomas met at the North Essex Dads with Special Needs Children (NEDS) group years ago, and they became friends.
James said: ‘This will be my first marathon, though I have done charity runs before, and I feel ready. I’m delighted to be running for Mary and Oscar, Tom’s my best mate, I love the family, love the kids. It also feels good to be running for a local cause and knowing exactly where the money goes and how it can help.’
Oscar Munson, aged six, from Colchester, and his sister Mary, eight, both have rare genetic disorder Rett Syndrome. After Oscar was diagnosed in Sept 2020 thanks to the 100,000 Genomes Project, his sister Mary, who had previously been diagnosed with autism, was also found to have the condition.
Oscar started showing evidence of developmental problems aged two months when he was unable to keep milk down. He now has severe mobility limitations and is non-verbal.
Mary was originally diagnosed with severe autism, but following Oscar’s diagnosis, was also diagnosed with Rett Syndrome, present in around one in 40,000 boys and one in 10,000 girls in the UK. She is also non-verbal and has epilepsy.
Dad Thomas, 39, an engineering manager, mum Madalaine, 35, and brother George, 11, are fundraising for a sensory room in an outhouse, which they estimate will cost around £15,000 to build.
Previous fundraising events have included Thomas running a 50km ultramarathon and climbing Snowdon carrying 45kg (the combined weight of Mary and Oscar at the time) as well as fundraisers in local pubs and donations from friends, family and supporters.
Thomas said: ‘Because Oscar and Mary have a sensory ‘diet’, it’s really important that the experience is right for them. There’s a centre they go to with a sensory room – blacked out with fibre-optic lights – which is incredibly calming for them. We’d really like to replicate that at home. We are very grateful for how family, friends and the community have got behind us. We want Mary and Oscar to have the best quality of life they can, and for George to have the most normal childhood possible. Every penny counts and it means a lot to have so many people backing us.’
The family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Mary and Oscar with healthcare needs and provides charity status to benefit from gift aid, corporate support whilst also providing donor reassurance.
Gill Gibb, Tree of Hope CEO said: ‘We’re delighted to be helping the Munson family with their continuing fundraising and wish James the best of luck with his challenge.’
To donate to Mary and Oscar’s fund, visit https://www.treeofhope.org.uk/mary-oscar-stronger-together/
North Essex Dads with Special Needs Children (NEDS) is a Facebook group which offers support for dads with special needs and organises events throughout the year for them to come along, make new friends and support each other. New members are always welcome. For more information visit https://www.facebook.com/groups/1040787683068846/?ref=share_group_link
For more information about Rett Syndrome, visit https://www.rettuk.org/what-is-rett-syndrome/faqs/
