Mary and Oscar stronger together fundraiser in West Bergholt

Oscar and Mary from Stanway have both been diagnosed with Rett syndrome and their parents are raising money to get their needs met.

Oscar, 5, started displaying symptoms when he was just two months old.

It took four years from when he first began showing symptoms until he was officially diagnosed in 2020, during his participation in the 100,000 Genomes Project.

Mary, 7, was diagnosed Autism before being diagnosed with Rett syndrome in 2021.

Rett syndrome is a genetic disorder which is believed to effect one in 12,000 girls born each year and is rarely seen in boys.

Their parents Tom and Maddy Munson didn’t know that the condition existed before they were diagnosed.

Mr Munson said: “Having the diagnosis gave us the closure that we had been searching for and once we had it, we could start planning our lives.

Tom and Maddy’s oldest child George has worked hard creating his own fundraisers for his siblings by coming up with the idea for the family to shave their heads and doing a 24 hour gaming event.

Mr Munson said that if someone with Rett syndrome stops using a particular skill then often they can lose the ability of the skill.

The family are now hoping to raise £15,000 to build a sensory room in their garden to allow them to have their sensory needs met with things like fibre optic lights and a sound system.

Mr Munson said: “They will get loads out of it, they are both amazing and give us so much. Oscar is really happy, loves people and has a cheeky laugh and Mary is so affectionate, she loves hugs and kisses and is always on the trampoline or on the move.

One group that has been a massive help to Tom was the North Essex dads of SEN children (NEDS) Facebook group.

The next fundraiser will be at the White Hart pub in West Bergholt on Monday, May 2 in aid of Mary and Oscar stronger together.

More information can be found on their Facebook page.