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THE mother at the centre of the latest “right-to-live” baby case said yesterday that she dreamt of one day being able to take her “little fighter” home from hospital for the first time.
“He is a true survivor, a true fighter, my absolute darling,” Ruth Winston-Jones said. “Luke really has guided me, that is why I call him Luke Leo, because he is a bold and brave lion.
“He is now doing everything that they said he would not be able to do. He is not in pain and has never had to resort to a ventilator. Instead, he is a happy little boy who is 100 per cent capable of feeling and giving love.”
Mrs Winston-Jones was speaking on the eve of a High Court hearing that will determine the fate of her nine-month-old son. “I have not done this alone. Luke has guided me,” she said.
Doctors will tell the court in London today that Luke is so ill that it is not in his best interests to resuscitate him if his condition deteriorates. He suffers from Edwards’s syndrome, a debilitating chromosome abnormality, with the added complication of a hole in the heart. He has spent all his life in hospitals and his outlook, doctors say, is extremely poor.
Mrs Winston-Jones, 35, from Holyhead, North Wales, sees her son in a very different way: a 4.5kg (10lb) survivor with a chubby face, who loves a cuddle from his mother and who is continuing to feed and grow, in defiance of the odds stacked against him.
Two weeks after a judge ruled that Charlotte Wyatt can be left to die if she stops breathing, Mrs Winston-Jones will tell a similar hearing that her son has earned the right to live. She will also tell Dame Elizabeth Butler-Sloss, President of the Family Division, of her conviction that the medical profession gave up on her son too early, refusing to operate on his hole in the heart because of his condition.
Luke’s mother, who has two other children, Andrew, 12, and Sophie, 7, said that she rarely left his bedside in his first 5½ months. She charted every “small miracle”, often in the early hours of the morning.
“He responds to me completely,” she said. “All I have to do is walk into the room and he will try to flutter his eyes. If he is sleeping he will wake up.
“He moves his head so he can look at his teddy bears. He loves the music when it is on and makes baby cooing noises of contentment, especially when I hold him up near to my ear. He is a very affectionate baby.
“He has just started using his arms to touch things, expressing himself with little stretches, touching and throwing his arms in the air and behind his head. I bought him a little activity centre and he reaches out for that. We have him on film reaching out and grabbing the trunk of a little elephant.
“When he goes to sleep he loves being cuddled in a shawl. He wakes up in the morning, stretches, looks at his toys and wants his milk. He has a major personality.
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