Essex family fundraising to support children with rare genetic condition
Oscar and Mary Munson, who are five and eight years old respectively, suffer from Rett's syndrome.
Last updated 10th Sep 2021
A family from Colchester are aiming to raise funds to help two of their children, who suffer from a rare genetic condition, Rett's Syndrome, which affects brain and motor development.
After five year old Oscar Munson received the diagnosis last year, his sister, who was previously diagnosed with autism, was also found to have the condition. Oscar suffers from severe mobility issues and is non-verbal. Mary is also non-verbal and suffers from epilepsy. The Munson family is now working with Tree of Hope, a charity that helps families set up fund-raising campaigns of their own to help fund major treatments.
Thomas Munson, the childrens' father works as a technical operations manager in Colchester. He says they are uncertain about what the future holds for Mary and Oscar. "We are undertaking the campaign in order to raise money to support our childrens' development but also experience life as other children, like our oldest son George, would, surrounded by family and hopefully thrive."
Rett's Syndrome occurs as a result of a mutation in the MECP 2 gene on the X chromosome. The condition is seen among 1 in 12000 girls born each year. It's prevalence is even more rare in boys. Rett's also manifests in different ways, with girls experiencing development delays, curvature of the spine and accompanied respiratory issues, among others. In boys, given that they show only one X chromosome, the symptoms occur far earlier and more severely as compared to girls.
All this explains why Thomas and the family had to wait for three years before Oscar was correctly diagnosed as having Rett's. They are also hoping to raise more awareness about the condition through their fundraising efforts.
They have so far managed to raise 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 through fundraisers in local pubs and donations from family, friends and supporters.
The money collected will go towards making the necessary adaptations in their home so that they can access areas where the family can get together. They are also looking to build a sensory room in their outhouse so that they can experience and work on their sensory processing without it being over-stimulated. Mary also requires physiotherapy to ensure she doesn't lose her mobility like her younger brother.
The White Hart in West 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 that are supporting their cause.
Mr. Munson 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 backing us.’
To donate to Mary and Oscar’s fund, visit https://www.treeofhope.org.uk/mary-oscar-stronger-together/