SIBLINGS living with a rare genetic disorder which causes severe mental and physical disability have been boosted by a wave of support from friends, family... and strangers.

Oscar Munson, aged five, from Colchester, and his sister Mary, seven, both have rare disorder Rett Syndrome.

After Oscar was diagnosed in September 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 just 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.

The disorder is present in around one in 40,000 boys and one in 12,000 girls in the UK. Mary is also non-verbal and has epilepsy.

Dad Thomas, 37, a technical operations manager, mum Madalaine, 32, and brother George, nine, are fundraising for adaptations 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.”

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The family has already raised more than £4,000 through events including Thomas walking up Snowdon carrying 45kg – the weight of Oscar and Mary combined at the time, as well as fundraisers in pubs and donations from family, friends and supporters.

The White Hart, in West Bergholt, has chosen the family to be its 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 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 chief executive officer, said: “We’re delighted to be helping the Munson family with their fundraising and wish them all the best.”

The 100,000 Genomes Project was established to sequence genomes from around 85,000 NHS patients affected by a rare disease, or cancer.

The project also created a new genomic medicine service for the NHS – transforming the way people are cared for and bringing about advanced diagnosis and personalised treatments.

Researchers are currently studying how best to use genomics in healthcare and how best to interpret the data to help patients.

The causes, diagnosis and treatment of disease is also being investigated.

Revealing which variants cause disease is also helping companies find new targeted medicines.

Kick-starting a UK genomics industry was another key aim of the project and the UK now has a vibrant genomics ecosystem.

To donate to Mary and Oscar’s fund, visit