Family blighted by genetic disease

PARENTS blighted by a rare genetic disease are struggling to come to terms with the death of their first born son.

Stephen Andrews died at his home in Gorleston on August 4 aged 46, suffering from Myotonic Dystrophy for years and barely uttering a word of complaint.

And now his family, some of whom also have the incurable condition, are hoping to spread awareness of the muscle destroying disease - and looking towards an uncertain future for themselves.

Kevin Andrews, 45, described how his brother used to cycle to the James Paget Hospital where he had worked for more than 20 years, and how he could be the “life and soul of the party when he let his hair down”.

But the illness slowly crippled him, robbing him of his strength, destroying his breathing and leaving him largely housebound for the last 18 months of his life. The cause of death was congested heart failure due to Myotonic Dystrophy.

“When he died it was a shock,” said Kevin.

“It's a life-limiting disease, but not classed as a life terminal disease at that stage. But it's also very rare disease and very few people, and even doctors, know anything about it, so more work needs to go into helping fight it.”

The lack of understanding has become evident to the family in a number of ways.

It is a condition that gets worse as it is passed on through the generations and often leads to infant disease in the third generation. It was 20 years after Stephen first showed symptoms that he was correctly diagnosed - in 2005 at a hospital in Cyprus.

It affects one in 8,000 people.

And despite the discovery that his father Frank and younger brother Paul, 40, had the condition, a long struggle to get help from the council to move into an appropriate house had so far failed.

Kevin, who lives in Cyprus and is the only brother not to be affected, described how an application for an assisted move through the council into a bungalow to make life easier for the family got nowhere.

Calling the family home a “death trap”, he described how Stephen, who had a second generation form of the condition, died at the top of the stairs the family had been so concerned about.

His mother, 68-year-old Norma Andrews, described how painful it was to watch Stephen struggle to breathe as he went around the house.

“The stairs he had to climb were very steep and I thought why can't I do anything about it. It made me so angry.”

Now Norma cares for her husband Frank, 77, five of whose siblings are also affected, and son Paul, who has gone from installing windows to being unable to use a lighter.

But she will not remember Stephen as someone whose life became dominated by a desperate illness; she will remember him as a loving son who enjoyed astrology and fireworks and music.

She remembered: “He had a quirky sense of humour and would never complain or get angry about anything.

“I remember he was quipping when he was in Papworth Hospital the day before he died and roaring with laughter.”

Kevin, who waited for the results from tests to discover if he had inherited the condition before trying for children, added: “Now it's important to let people know about this. There could be any number suffering symptoms and not sure of what it is and who could pass on something that's devastating.”

The funeral was due to take place at Gorleston Crematorium at 1.20pm yesterday.

For information go to www.myotonicdystrophysupport

group.org/