The mother propped up on pillows with her baby by her side is waiting for someone to die. Breathing is difficult, even with the help of nasal oxygen, so her sentences are short, punctuated by quick, sharp coughs. Her hospital bag has been packed for six months. Her husband has given up his job to care for her and their one-year-old daughter, Lucia. Her parents are ready for the telephone call that will summon her to Harefield Hospital for a double lung transplant operation. But as the days creep by, Milly Douglas-Pennant’s bright spirit, and the energy she has poured into defying cystic fibrosis (CF) for so many years, is becoming harder to sustain. Doctors say her medical situation is now “desperate”.

“I’ve just got to hold on,” she says. “I don’t feel excited about it any more. It is so monotonous. The waiting. I wonder how I can possibly get through it… how long it will be. There are times when I get depressed. Other days, I think I can do it.

“I find it hard to imagine being able to do normal things. The more time goes by like this, the harder it is to remember. Manolo [her Spanish husband] will paint a scene for me. ‘Imagine we are walking along a beach,e_SSRq he’ll say. I can’t imagine walking along a beach and not being breathless. Manolo has probably forgotten what normal life is. I worry about him if it all goes wrong. I worry about what he’s going to go through. I think of time stretching out ahead of me, just stretching out.”

She is still hopeful, but those around her see that she is sinking for want of a transplant donor and they feel helpless. Lucia is the joy of all their lives. The fear no one mentions, underlying everything, is that Milly, 29, may not see her grow up…..Continue reading