Manuela Martinez and her colleagues were intrigued. Why was it that women who had suffered domestic violence seemed more prone to outbreaks of cold sores?

On the surface there appeared to be no connection between the physical and emotional abuse they suffered and the herpes infection that broke out on their lips. London for the 2012 Olympics? No chance, unless Alexander McQueen, ex- Givenchy, can be persuaded to knock up gear for Seb Coe & co…. Men will wear suits, with a lining wittily displaying the map of Paris. Over the next four years she became agoraphobic and took up smoking, and then attempted suicide. They bought a house in Barnes, where they had a dog and two cats.Unsurprisingly, there were further trials. At 32, Alexandra began to suffer depression, which she said “took hold of me like bindweed”.

Life improved further when she met and married Andrew Gammon at the age of 28. Yet she got into St Martins College of Art and then, with a Royal Society of Arts Bursary, into Chelsea College of Art. And she also struggled with being profoundly hard of hearing. I remember one time he pretended to be a porter taking ladies’ coats and stroking them, and he would arrive with gifts. I think he understood that she needed something special.”It was determination that enabled Alexandra to get over difficult schooldays when, as a result of missing so much time, she fell behind. We cope, and just hope that there will be medical advances to make things easier in the future. What else can we do? But sometimes we both just cry.”The one way DBA can be cured is with bone marrow transplants, but the risk of this is unacceptably high unless there is a match within the family; then the success rate is 85 per cent.

But, Ball explains, there is ongoing research into new drugs and treatments, and studies designed to learn more about the illness are under way.Alexandra had a “fierce determination to live her life,” recalls Veronica They became ever closer as they grew older. Veronica remembers trips on the Eurostar to Paris and Bruges: “We always went first class, which she loved.”And she remembers with pleasure how Alexandra’s godfather Ralph Richardson took an interest: “He used to visit often and he spent a lot of time talking with her, which she loved Sometimes he’d perform. Natalie says: “We have to persuade her to let us put the needle into a fleshy part of her body, and sometimes she really doesn’t want that. Then it is left in for the night so the liquid can go into her But we don’t know if there will be side effects So it’s a difficult lifestyle for all of us.

She did things like telling me to kiss her toes if I wanted to borrow the Sellotape.”Natalie and Stuart know they have to be careful that their younger daughter Alice, 20 months old, doesn’t feel jealous of Saskia, who inevitably gets a great deal of attention. But so far their main concern is helping their “stoic and defiantly happy” little girl cope with her monthly blood transfusions and the nightly infusion of chelating drug. To deal with the iron, chelation drugs are given, usually intravenously.Veronica remembers the pattern of her sister’s daily steroid injections, the visits to hospital for transfusions, and how Alexandra hated it all. She also remembers, with a wry smile, “sometimes feeling jealous of her when she got home from hospital and was allowed into our parents’ bed.

I knew I was the one with the lucky deck of cards, and that I shouldn’t feel that way, but I did.” And she says, smiling, that she suspects Alexandra knew she had a certain power with her affliction: “She admitted when we got older that she had bullied me a bit. Without treatment for this, the DBA sufferer is likely to die sometime around the teen years. If this means the dose cannot sustain red cell count, or if the DBA does not respond to steroids, regular blood transfusions must be given.”The trouble here is that while normally the body absorbs iron easily and recycles it, with transfusions this does not happen and the iron gets deposited in the liver, heart, muscle, pancreas and elsewhere. In up to a quarter of children there is a fault with a gene (RPS19) and a hereditary link.The symptoms are similar to other kinds of anaemia: pallor, irregular heartbeat, extreme fatigue and heart murmurs due to the increased work the heart needs to do to keep oxygen moving around the body. A baby may be born well, but then fail to go on making the vital cells.