AT only 20 months old, little blonde-haired Lola toddles across the floor by her grandmother's feet.
Carol Thomas longs to bend down and pick her up, but with her lungs operating at just 20 per cent of their capacity, it is not possible.
It is just one of the many things that the 52-year-old from Rivergreen, Clifton, is unable to do because of her condition.
She longs to take holidays with her family again and work once more but at the moment a simple cold or chest infection can leave her in hospital.
After suffering a series of chest illnesses when she was 45, she was diagnosed with alpha-1 antitrypsin deficiency, a protein deficiency that can attack the healthy tissue of the lungs.
The genetic disease has weakened her lungs and while the condition will not be cured by new lungs, it is believed it would take as long again for them to deteriorate.
Mrs Thomas is one of four people waiting for a lung transplant in Notts.
But with only about 35 per cent of Notts residents on the organ donor register, the chances of finding a match are reduced, and her family are urging people to sign up.
Her son Caine Thomas, 31, who also lives in Clifton, said: "It's been hard seeing mum not well. I was quite scared when we found out how ill she was, but mum kept it away from everyone. We knew she was ill but she never admitted how bad it was."
His partner Lisa Whitehead added: "I would never have thought about being an organ donor before, but people need to realise how much it could help someone."
They have three children; Bayleigh, 10, Harrison, five, and Lola, who is just 20 months. And Mrs Thomas is also grandmother to her son Clifford's four-year old daughter, Matilda.
Bayleigh, who has written a letter about how new lungs for her grandmother would transform their lives (opposite), said: "I'd really like to see more people go on the organ donor list and build donations."
Her five-year-old brother Harrison, who attends Dovecote Primary School in Clifton with Bayleigh, added: "I want to see mama better, she'd be able to chase me up the road then. I'd like to go to Disneyland if mama got better."
Mrs Thomas said she would be happy if she could go and see them in school plays, or pick up awards, which at the moment is very difficult for her.
"We're just a normal family," she said. "And if it can happen to us, it can happen to anyone. We're a big, big family, we're a very close-knit family, it's had a big impact on all of them.
"It just rips their hearts out when they see me like this, but we carry on like normal."
Fortunately none of her children or grand-children are thought to have the condition as Mrs Thomas said both parents must be carriers, and her husband Gary is not.
She has been on the transplant list since August last year and has been called twice for possible transplants.
But the first time she was not well enough to go through the operation and the second time, after travelling to Newcastle for the procedure, they found her antibodies did not match with the donor's, so her body may have rejected the lungs.
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