By CATHERINE MASTERS
Baby Beau Prosser lies in her hospital bed bright-eyed and alert, smiling at her mother, Katie Prosser.
But her tiny body heaves as she pants for breath and she has tubes in her nose to supply oxygen and food because she cannot suck.
Although Beau is 5 months
old she weighs no more than a 4-week-old baby and, while a cleft lip is obvious, she has a collection of internal abnormalities that are threatening her life.
Her condition is so rare that specialists are searching overseas for answers.
She has had large cysts removed from her lungs and has survived a collapsed lung and heart problems. Catching a cold left her barely able to breathe.
Doctors at Starship children's hospital would not talk to the Herald last night but Mrs Prosser said the specialists believed Beau could have Fryns syndrome, an inherited disorder consisting of multiple abnormalities. Doctors were sending details to an expert in Belgium who first described the disorder in 1979.
Specialists have told the family only 45 cases of Fryns syndrome have been documented.
Mrs Prosser and her husband, Mark, who is in Blenheim looking after their three other children, have their bad days and continue to shed tears over their fourth child.
But yesterday Mrs Prosser said she had learned to take each day as it came.
"I'm used to it and also I'm just so glad she's alive ... There are a lot of people I've met in here who have got it a lot worse than we have."
Because Beau is alert she hopes mental impairment problems associated with Fryns syndrome will not be too severe.
But Beau was a happy child and was a blessing, said Mrs Prosser.
"She's got three brothers and sisters who love her so much. She's really special. She seems to bring out the best in everybody."
nzherald.co.nz/health
