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Colchester family raising funds for their two children with rare syndrome

Oscar Munson, aged five from Colchester, is believed to be one of only six boys with genetic condition Rett Syndrome in the UK. After being diagnosed in Sept 2020 thanks to the 100,000 Genome 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, aged 7, was originally diagnosed with severe autism, but following Oscar’s diagnosis, was also diagnosed with Rett Syndrome, present in around one in 40,000 children in the UK. She is also non-verbal and has epilepsy.


Dad Thomas, 37, a technical operations manager, and Madalaine, 32, and brother George, 9, are fundraising for adaptions to their house to improve the quality of life for Mary and Oscar and to make life easier for the family. They are also hoping to build a sensory room in an outhouse and raise money for physiotherapy for Mary to prevent her losing mobility.


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 also need to create a bedroom with a wet room for Oscar.’


The family has already raised more than £4000 through events including Thomas walking up Snowdon carrying 45kg – the weight of Oscar and Mary combined at the time, as well as fundraisers in local pubs and donations from family, friends and supporters.


The White Hart in Bergholt has chosen the family to be their charity for 2022 and will be holding several events, and there are also quiz nights coming up in November at the Three Wise Monkeys in Colchester and Ipswich.


Thomas added: ‘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 behind 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 fundraising and wish them all the best.’


To donate to Mary and Oscar’s fund, visit


For more information, images or to arrange interviews please contact Catherine Cooper on 00 33 5 61 69 57 89, 00 33 6 09 03 55 88 or


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