LITTLE Lily Tunstall has spent half of her short life in hospital due to an incredibly rare condition.
At just 18 months old she has already had to battle through measles, several bouts of pneumonia and at one point almost died after she stopped breathing.
But the Hartlepool youngster still manages big smiles and hugs for her loving family despite having to fight each day just to catch her breath.
After dozens of tests and months in children’s wards being checked over by doctors, Lily was diagnosed with obliterative bronchiolitis (OB), which means her lungs are damaged and they do not take in as much oxygen as they should.
Lily is just one of 25 people in the North of England with the illness. There are 45 people known to have the condition nationally.
Her illness was not discovered until the Hartlepool youngster stopped breathing at 10 weeks old and her mum pushed medics to carry out thorough tests to find out what was wrong with her baby.
Mum-of-three Katrina Pfeiffer said: “It has been an 18-month struggle. They just put it down to bronchitis. Before that they thought it was asthma.
“We’ve had to really push to find out what is wrong with her, and it turns out it is a condition that is very rare and that people are not aware of.
“There were times that I was questioning myself, but I knew there was something wrong and I refused to be sent away.
“Now I want people to know about this condition as there will be other children out there who have been misdiagnosed.”
Lily was originally taken to the University Hospital of North Tees, in Stockton, but medics were at a loss to what was causing her strange symptoms.
When Lily then came down with measles, Katrina pushed for more tests and the youngster was transferred to see specialists at Newcastle Royal Victoria Infirmary.
Katrina, who lives in High Street, Greatham, said: “They found out that Lily had caught pneumonia when she was very young and she had kept catching it.
“They told me about OB and I felt relief knowing what Lily had and what we had to deal with.”
Lily still regularly visits hospital and has already had three operations to clear mucus from her lungs, and could need a lung transplant in the future if her condition gets worse.
But her family try to treat her as a normal girl and she regularly plays with her brothers, Alexander Pfeiffer, six, who goes to Greatham Primary School, and three-year-old Oliver Tunstall.
Katrina said: “She gets short of breath fast, but she is very aware for her age of her feelings.
“She will come inside and have a nap and then go back out again, or come in and sit and focus on her breathing.
“In some ways she is very grown up and because she spent so long in hospital beds, she doesn’t miss anything and is mentally very developed.
“No-one can say what the long-term will hold for Lily. She will have more operations to clear her lungs out and we will try and keep her infection free, but it’s so hard.
“They don’t know why people get OB as there hasn’t been enough research into it so it’s hard to see what the future will be.”
Katrina, 31, now worries that there are more parents out there similar to herself and partner Jonathan Tunstall, 29, with similar concerns.
“I had never heard of it and had no idea what it was,” she said.
So she has organised a family fun day on Saturday, August 3, to raise awareness and money for the charity Breathtakers OB Trust, which supports those with obliterative bronchiolitis.
It will take place in Greatham Community Centre between noon and 4pm.