10 May ‘M.O.S.T Fest’ fun day in Wormingford for Colchester children with disabilities
A Colchester family is holding a family fun day at The Crown pub in Wormingford on June 1 to raise funds for their children with disabilities.
Oscar Munson, aged seven, from Colchester, and his sister Mary, nine, 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, 40, an engineering manager, mum Madalaine, 35, brothers George, 12, and Arthur, 16 months are fundraising for therapies and a sensory equipment for the children.
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: ‘We are really grateful to our friends, family and supporters who have helped us raise funds to build a sensory garden and room for Oscar and Mary, which has astroturf and a fenced area so it’s fully safe – it makes such a difference to them. We’ve also been able to make adaptions to our home so they can both have bedrooms on the ground floor which has improved family life for us all.’
The fun day – M.O.S.T. Fest (Mary and Oscar, Stronger Together) runs from 3pm until late and will feature face painting and hair braiding, a bouncy castle, live music, fairground games, a DJ for the evening and a sensory area.
Thomas added: ‘We are aiming to make the event accessible to all – everyone is very welcome. We are very grateful for how everyone has got behind us. We want Mary and Oscar to have the best quality of life they can, and for George and Arthur 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 which cannot be provided by the NHS and provides charity status to benefit from gift aid, corporate support whilst also providing donor reassurance.
Becky Andrew, Tree of Hope CEO said: ‘We’re delighted to be helping the Munson family with their continuing fundraising and hope M.O.S.T Fest is a great day out! We are here to help however we can.’
To donate to Mary and Oscar’s fund, visit https://www.treeofhope.org.uk/mary-oscar-stronger-together/
