Footballers rally for Black Country baby battling 1 in 6,000 condition
"We were told her life expectancy was 12 months but obviously we have gone beyond that. We are taking every day as it comes."
The heartbreaking words of Simone Adams, who is cherishing the time she has with young daughter Maebh.
The 18-month-old suffers with Edwards syndrome, a rare life-limiting condition which affects around 1 in 6,000 babies, and can result in major heart defects and other organ problems. She has so far confounded experts who gave her just a year to live.
The uncertainty has been difficult for Simone and husband Kevin but they say they are determined to give their daughter the best life possible.
Now the family have been touched by the generosity of a local football team, which decided to hand over £1,100 from a fundraising dinner. It will allow a new hot spa to be fitted at the family home in Netherton, Dudley, to help 18-month-old Maebh to help with her mobility.
Nertherton Colts have been supporting good causes in the area for years with money raised through raffles and donations and this year chose to help Maebh's family.
Simone, aged 32, said: "Ten days after she was born it came back she had got Edwards syndrome. Most babies don't make it to birth.
"Maebh has a tiny hole in her heart but it is closing. We don't know her life expectancy. There is no textbook answer to how it is going to develop.
"They told me when she was diagnosed that she wouldn't smile, she wouldn't see us and she wouldn't be able to sit up but Maebh's very good.
"In the early days it was horrific. She stopped breathing a few times at home and we had to bring her back. It was quite daunting but now she's just Maebh."
It is hoped adding the spa in the garden will improve Maebh's quality of life.
Simone said: "Because Maebh has a very low immune system she picks up coughs and colds. A simple cold could kill her.
"We're hoping to get the spa for hydrotherapy reasons and her mobility. It needs to be fully enclosed with heating as Maebh has a problem regulating her temperature."
Netherton Colts treasurer Carl Botley said: "Every year we raise money and it normally goes to young kids. We try to give a bit of help to someone who needs it."
The couple were overwhelmed when they found out the money had been raised.
Simone said: "We don't really see ourselves as a family in need. We are just a family getting on.
"When these things happen people like Carl are touched by Maebh and it took us a long time to realise there are nice, good people in the world."
