'IT was very, very hard. I do regret it, but I don't, if you see what I mean. I don't when I see my children in pain."
Eleanor Tracey is talking about the heartbreaking decision she and her husband Peter made to terminate her pregnancy four years ago.
It wasn't a case of the baby being unwanted, far from it, but genetic tests at 11 weeks showed the unborn boy had
the same condition, Duchenne muscular dystrophy, as her two sons.
"It was a horrendous time," Eleanor admits. "But we decided it just wasn't fair on the other children."
Now, the 37-year-old from Prestonpans says she has come to terms with the idea that she'll never have more children. She's been told she would be very likely to have more boys if she tried and the disease attacks males, although females are carriers.
There is another fact that's she's finding harder to accept – that her two beloved boys, Daniel, 15, and David, 11, may well not be with her for that long.
Sufferers of Duchenne muscular dystrophy rarely reach their 30s while many die while still in their teens.
"I have no idea," she says when asked what she'll do when they are no longer around. "It's hard to think about as my life revolves around the boys."
And that's no exaggeration. The couple's council house took two years to adapt and now features gadgets such as hoists, specially designed toilets and ventilators.
Getting the youngsters up, dressed downstairs and off to school and then reversing it all at the end of the day is hard work, while bath time can take up to two hours.
"It's impossible to lead a normal life," admits Eleanor. "There's a lot of to-ing and fro-ing, always in and out of hospital and all kinds of people from all kinds of services are round looking at them."
It's a grinding slog but Eleanor is upbeat and cheery as she discusses it. Something that has made life easier, she says, is the Rachel House Children's Hospice in Kinross.
Run by the Children's Hospice Association Scotland and helping terminally-ill children and their families from across the Lothians, the hospice is, Eleanor says, "a Godsend".
"We go there a few times a year and it is just perfect. You wouldn't think it but it's a really happy place. I can go there and relax in silence knowing the children are down the stairs getting the best possible care," she says.
Still, it's not exactly the life Eleanor imagined when she and 49-year-old Peter, a street cleaner for Edinburgh City Council, started a family.
Although Duchenne's is hereditary, there was no warning that it ran in Eleanor's family and it was only when Daniel proved a very slow developer that alarm bells started to ring.
"He was three before he began walking. And he was very clumsy, he was always tripping up and falling over a lot more than other children, and he would find it difficult to get up," Eleanor says.
At first the family was told the little boy had dyspraxia, a neurological problem. For the next few years, he was subjected to a range of tests. Eventually, at five-and-a-half, consultants at the Royal Edinburgh Hospital for Sick Children diagnosed Duchenne's after Daniel endured an operation to remove a piece of muscle from his thigh for testing.
At the time, a then-pregnant Eleanor was told it was highly likely she was the carrier who had passed on the condition to her son, a fact confirmed a few months later when her second son David was born and tested positive.
"The first feeling was guilt, because I had passed on a disease to them that would ultimately kill them. I felt like I was very much to blame for this," she says. "That was hard to take. I was the carrier and, as soon as I found out, my two sisters went to get tested as well, but they got the all clear."
Daniel lost the ability to walk at the age of nine. He also has learning difficulties and can do very little for himself. A recent spinal fusion – an operation whereby two vertebrae are joined together to stabilise the spine – has eased his physical condition, but he has never been able to read nor write. Only those specially trained to do so can move him, it has to be done with much care.
His younger brother is slightly better off. He can still walk and can also read slowly and write his own name.
It is impossible to put an exact life expectancy on either child as each case of Duchenne's is unique.
"I try not to think of it too much," adds Eleanor. "You have to consider these things when you go through what we have. But I try to make their lives as good as possible just now.
"We've been to Florida a few times and, although their condition can be very painful for them at times and it is difficult to watch them go through that, they are happy children, and it means a lot to see them smile.
"They get on very well together and have a great rapport, just like all brothers really. I also try to take them out a lot and do as many activities as I can with them, whether it is watching some DVDs all together or art."
Both of them have been able to attend mainstream schools, albeit in specialist units. David followed his brother to Prestonpans Primary while Daniel is now attending Ross High School, Tranent.
"I was worried about them in mainstream schools at first but, in fact, the kids are absolutely magnificent with both of them and they are both really happy there," adds Eleanor.
"It's hard to know how much they are aware of their condition. I think David knows a bit more than Daniel does. I've always tried to be up front and honest about it because they deserve to know as much as I can tell them. We are regular visitors to the hospital and they can see that, but the nurses and the doctors are wonderful with them and I really feel I can trust them with their illness."
When the diagnosis was revealed, experts told Eleanor she couldn't expect her boys to live much into adulthood or even adolescence. However, scientific progress in the last ten years has helped tremendously, particularly Daniel's spinal fusion, although Eleanor is trying to stay realistic.
"I have become like a sponge, constantly absorbing information about the condition," she continues. "I am completely realistic about their conditions and to think about it breaks my heart. It will happen one day regardless of what anyone does for them and that is very hard to take. I take great comfort in the fact they are happy and we try and cram as much into their lives as possible."
A MALE DISEASEDUCHENNE muscular dystrophy is a genetic disease that affects around one in 3500 males.
Although the disease can be carried and passed on by women, the disease itself only affects males.
It involves the wasting away of muscles and usually manifests itself around the age of four.
Depending on the person, the disease usually claims its victims between the mid teens and early 30s. Muscles wear away causing paralysis and most sufferers are confined to a wheelchair by their teens.
'LIFE-AFFIRMING RETREATS'HOLLYWOOD star Ewan McGregor has helped Rachel House launch its latest fundraising drive.
The Scots Star Wars and Trainspotting actor has appeared in short films alongside children and their families at Rachel House and another Children's Hospice Association retreat in Balloch.
At the launch, the actor said: "I had this notion that children's hospices are sad places. Nothing could be further from the truth.
"They are vibrant life-affirming retreats. They are a wonderfully enriching celebration of every child and young person's potential and of life itself, however short it may be.
"The aim of CHAS is to enable families to enjoy their time together and share precious memories. The emphasis is on the positive and the here and now.
"They provide first-class care for the child while, at the same time, giving mums, dads, brothers, sisters and grandparents the opportunity to relax, recharge their batteries and have a break."
Rachel House is based in the Kinross-shire countryside and intended to be a peaceful but cheerful resource for terminally-ill children and their families.
The whole family can spend several weeks a year at the centre where sick children can receive therapy and attention while parents can relax as professionals look after their youngsters.
Opened in 1996, the hospice is regarded by families across Scotland as "a Godsend".
It accepts that children using the facilities will have a short life, and aims to make the years they are alive as pleasurable, comfortable and memorable as possible.
