The sister and brother, aged eight and two, were born with virtually NO immune system, because of a disease that affects just ONE other person in Britain.
It meant that if they caught germs from contact with other people they could die.
But thanks to a revolutionary treatment, both are looking forward to normal lives - and enjoy being smothered in goodnight kisses from parents Mandy Pedley and Chris Hicklin.
Mandy, 36, said: "It's lovely to be able to hug and kiss them like a mother should do."
Grace was just nine months old when she was diagnosed with the hereditary ICF syndrome. Only 45 people in the world are known to suffer from it.
As a tot, she almost died FOUR times after catching various illnesses. Doctors at Newcastle General Hospital said her only hope was a bone marrow transplant to flush out the gene that was killing her antibodies.
But Grace had to live in a sterile 8ft x 8ft "bubble" at the hospital for SEVEN MONTHS, before and after the op. She also had to have gruelling chemotherapy to kill off her own bone marrow.
Mandy said: "She looked shocking - grey and thin, with tubes everywhere." But the op worked and by the age of five, Grace was like any other little girl. Her parents then decided to try for another baby - but there was a one in four chance it could have ICF.
Mandy said: "We were convinced everything would be all right." To their devastation, son Luke was diagnosed six days after he was born in 2007, and had to go through the same harrowing treatment. The chemo caused horrific burns to his skin and he was pumped full of morphine. But finally in May he was allowed home.
Mandy said: "He's doing brilliantly. The doctors say Grace is a fantastic advert for a bone marrow transplant - and when I look at her, I know Luke will be all right."
IF you are interested in being a bone marrow donor visit www.blood. co.uk/pages/marrow_info.htmlor phone 03001 232323.
This article has 1 comment
Such a lovely but sad story. All the best to you all and wishing Luke a speedy recovery xx
By Angela. Posted July 12 2009 at 1:41 PM.