IDENTICAL twins Oscar and Sebastian Spink, age 9, from Lymm, who both suffer from a rare muscle wasting condition, are set to tackle 26 laps of their garden tomorrow (April 26) in the 2.6 challenge to raise funds for Muscular Dystrophy UK.
The boys were diagnosed last summer with fascioscapulohumeral dystrophy (FSHD) – a rare , progressive muscle-wasting condition that slowly destroys muscle, making any physical movement difficult and even affects their ability to smile. There is currently no cure or treatment for the condition.
Three parents of their friends from Cherry Tree Primary in Lymm were set to run the London Marathon this weekend to raise much-needed funds for Muscular Dystrophy UK. Since it has been postponed until October the boys took matters into their own hands to try to raise some money themselves. They decided to take on the 2.6 challenge – a nationwide initiative to raise funds for charities that have lost income due to Covid-19.
The boys’ mum, Kerry Spink, said: “Their initial target – to raise £260 – was smashed in the first four hours as donations flooded into their appeal. The current total stands at just over £2000 – amazing amount for two little boys to raise in less than 48 hours! Muscular Dystrophy UK have been a lifeline to us since diagnosis but are set to lose a huge amount of income from cancelled events during the lockdown. We’re trying to raise as much as we can to help them carry on with their vital support for us and other families affected by muscle-wasting conditions.
“Oscar and Sebastian are such gorgeous, cheeky little boys to know. We were heartbroken when we found out how debilitating this condition can become and we can already see how the simple act of moving around is becoming more and more difficult for them. Even ordinary things we take for granted, such as walking upstairs, can be a challenge, so trying to get round the garden 26 times is going to be tough! They never fail to amaze us with their resilience and determination to do as much as they can.”
Facioscapulohumeral dystrophy (FSHD) is a genetic muscle-wasting condition that primarily affects the face, shoulders and upper arms but can also cause weakness in the legs and rest of the body. It affects around 1 in 20,000 people and there are only around 2,500 people in the UK living with this condition.
Anyone who would like to contribute to the fund can do so at https://www.justgiving.com/fundraising/oscarandseb
