Gerry and Jenny met in their early 20s. He was an engineer, she worked in retail. They fell in love and got married, with dreams of starting a family.
Jenny’s brother had muscular dystrophy and she worried that she might be a carrier. So she made sure she was tested before getting married and again before having children. Both tests came back negative. She was told just to go ahead and start her family, and stop worrying.
Their first son, Stephen, was born in 1967. Paul followed two years and four months later. Their family was complete. But one day, when Stephen was at nursery, Jenny noticed how he struggled to climb the stairs. The way he moved looked frighteningly familiar to her. It still took some work to convince the doctors of the need to test him, but eventually they did.
Gerry and Jenny speak about receiving the diagnosis as though it happened yesterday. There was a general power failure and they sat in the dark in the consultant’s room, taking in the devastating news that Stephen had Duchenne muscular dystrophy. It was the darkest day of their lives. And it was Jenny’s greatest fear. The consultant suggested they have Paul tested too.
Jenny and Gerry had never thought he might have Duchenne, but they went along with the tests. It was just a matter of time before he got the same diagnosis.
We were shattered by this news. And we thought we had to do something. We decided to raise money to help find a cure and help our boys. We joined our local fundraising branch and started organising events. Over the next 15 years, we raised around £200,000 and met lot of interesting people, including Richard Attenborough.
Jenny and Gerry were also determined to create the best possible lives and futures for their boys. Jenny fought for them to have access to mainstream schools and a good education. They were bright boys and she didn’t want them treated as though they weren’t because of their physical disability. Both went on to achieve well in their academic careers. As a family, they travelled widely and had wonderful holidays together. Jenny and Gerry wanted to create good memories and make sure their boys had happy, fulfilling lives.
When the boys were both in their early 20s, the family travelled to Salisbury to celebrate Jenny’s aunt’s 90th birthday. It was a happy day. On their way home, they could see Stephen was ill so they stopped off to take him to hospital. Within a few hours, Stephen had died.
One of the hardest things was having to drive home with an empty wheelchair in the car.
Paul died just four months later.
Jenny and Gerry said,
We decided to remember our boys with a gift to MDUK in our Wills. There will be a cure for all muscle-wasting conditions one day, and our gift will help to find it.
Watch Jenny and Gerry talk about why they are leaving a gift in their Wills to help create a future free from the limitations of muscular dystrophy.
Will you join them and include a gift in your Will to MDUK too? Find out more by visiting the Gifts in Wills page.