TO SEE her cheeky smiling face little Niamh Walker, of Huddersfield, looks like any other beaming toddler.
She crawls and waddles and has already spoken a few first words.
But behind her beautiful grin the 15-month-old’s body fights for life as she desperately waits for a new heart.
Niamh is the youngest girl in the country to be on the heart transplant register.
The toddler’s battle began when she was diagnosed with a heart condition, cardiomyopathy, at just 10 weeks old.
Now Fenay Bridge couple Simon Walker and Sam Lee live each day waiting for a phone call that could save their baby’s life for good.
Mum Sam, 25, said: “We don’t really ponder over it because you can’t think about it all the time. We have to make the most of her while she is well.
“At the moment she is doing well and has been for a while. But she does get tired because her body is working so hard.
“She crawls around and then has to have a rest. She also gets very sweaty because her body is working so hard.
“We’re in a routine now, but to start with it was mad because we were always planning and taking everything with us.
“But we try not to let it get to us. You’ve just got to live each day as it comes and when it happens it will.”
Niamh Caitlin was born healthy at Huddersfield Royal Infirmary on April 12, 2006. At first she seemed to be thriving, but by 10 weeks old her parents began to worry something was wrong.
Sam, 25, said: “She was so well when she was born and was putting on weight, but it seemed to go downhill from there.
“She was getting breathless and was being sick with every feed. She was so sleepy and lethargic too.
“The doctor said it could be a bug and gave her antibiotics. But she didn’t get any better.”
Niamh – who has a four-year-old brother, Bevan – was eventually referred to the Royal Infirmary, where medics suspected she had a heart murmur.
A heart scan at Leeds General Infirmary showed the left side of her heart muscle was so dilated that her heart would be damaged for good.
Nobody knows what caused the condition, but one suggestion has been that an infection could have attacked her heart, creating permanent damage.
Sam said: “It was such a shock. You never expect it to be anything like that.
“She was in LGI for 17 weeks and spent most of that time in a high-dependency unit. She was so tired and poorly that she just lay there sleeping.
“It was such a strain, but it was just a case of finding a happy medium of what drugs her body could tolerate.
“She is now fed by a tube into her nose that goes into her stomach. Her medicines go in that way too.
“Without the tube on her face you wouldn’t know anything was wrong. She is doing so well.”
Niamh now relies on several drugs to let her carry on a normal life at home until a suitable donor is found.
Simon, 25, works as a hairdresser at the Silk Hair Lounge based at the Total Fitness gym in Waterloo. Sam has also returned to work as a part-time admin assistant in Sowerby Bridge.
She added: “It will be a year at the end of August. We always expected it would happen sooner.
“We have had two false alarms already. Unfortunately the hearts were not in a good enough condition.
“It was disappointing because we were prepared for it.
“But at least now we know what to expect.”
Niamh will have the major operation at the Freeman Hospital in Newcastle, one of only two in the country to carry out heart transplants on children.
Neil Wrightson, the hospital’s transplant co-ordinator, said: “Niamh has been on the list for a long time. We would hope there would be a transplant in the near future, but we never know when that is going to be.
“She is one of a number of children waiting for transplants. We would therefore urge more people to consider organ donation.”
To register as an organ donor call UK Transplant on 0845 6060400.