A couple who found out two of their three children suffer from a rare degenerative condition have set up a charity to raise awareness and help support them as their lives change in the years to come.
Anna and Owen Rogers, from Bourne, had always put the slight physical difficulties their sons Ben, nine, and Sam, five, experienced down to the unpredictability of growing up. But as Ben in particular got older, they began to wonder. He would struggle to climb stairs properly, and his movement could be unusual.
They took both their boys for tests and as one thing after another was ruled out, worry started to grow. It was finally confirmed in November that both boys had a form of muscular dystrophy known as Duchenne.
The condition affects around one in every 3,500 boys and has an average life expectancy of about 25. While it is rare, females can have symptoms and even need to use a wheelchair. If a female carrier is symptomatic she is known as a manifesting carrier.
The news came as a hammer blow to Anna and Owen, who also have a seven-year-old daughter Lily.
“When we actually found out what it was, we were in shock,” said Anna. “We found out about both boys in a week.
“We had spent weeks looking on the internet trying to find out whether we could rule out Duchenne. We were devastated.”
After a couple of weeks of tears and soul searching, the couple decided to focus on the future. They were already in the process of having an extension to their home in Tarragon Way built, and those doing the work were happy to help. Designer Jenny McIntee reworked the plans for free to accommodate wheelchairs, a downstairs bedroom and wet room. Impressions Kitchen Design refunded the cost of the kitchen island unit they would no longer would have room for. And Jason Rock Builders kept costs low and were helpful and considerate over changes to plans.
The couple also began to research what could be done for their children. They decided to set up a charity, called Forbenandsam, with three aims: research, awareness and fundraising.
Following the diagnoses the couple discovered research into a therapy known as gene editing, where “molecular scissors” are used to snip out faulty or duplicated code that causes conditions such as Duchenne. This research is still in the early stages, but the couple hope to help fund it and speed up progress.
This is a long-term goal, but in the short term the couple want to raise awareness of Duchenne. This is particularly important for them, as they know their sons, who are pupils at Bourne Abbey, will eventually have to use wheelchairs permanently, and will often be seen around Bourne.
Owen said: “We would like people to understand it so when they see them in their wheelchairs they recognise that it’s them, and they are like that because of Duchenne.”
And the final goal is to raise money for equipment and life experiences to give Ben and Sam the best quality of life possible.
Owen said: “That’s the positive thing. It can’t all be negative. We have got to look at what we have got and make the best of it. They are still little boys. There’s just this thing going on inside that’s slowly changing them.”
A website for the charity is under construction, but you can find out more at www.facebook.com/forbenandsam.