MOST parents keep an eye on what their children eat.
Picture: CARMELA ROCHE Connor, 6, and Lincoln, 2, with mum Tara Morrison.But when your two boys could die if they eat meat, dairy or fish, watching becomes an obsession.
Tara Morrison’s sons, Connor, 6, and Lincoln, 2, have a rare genetic disease called homocysturina.
Their bodies cannot break down protein properly.
“You must constantly watch and monitor what they eat,” said Mrs Morrison of Castle Hill.
“Most people with the disease can’t eat meat, dairy, bread or fish, but their little bodies need protein to grow so they get that from supplements.
“My boys are lucky because they can eat a small, weighed and measured amount of specially prepared breads and pasta, but most can’t even have that.”
A dietary lapse for homocysturina patients has serious consequences.
“It is not like an allergic reaction, protein is toxic to their bodies and can cause irreparable damage,” she said.
If sufferers eat protein, or have the disease and are undiagnosed, it can cause growth, learning and behaviour delays, brain damage, lens dislocation – where the lens of the eye can become loose and move – and glaucoma. It can also cause osteoporosis, seizures, muscle weakness, heart disease and stroke.
Mrs Morrison said the little-known and littleunderstood disease can be as hard on the parents as it is on the child.
So, with husband Ryan, she has started a charity and patient support group, HCU Network Australia.
It aims to bring patients and parents together and raise awareness, particularly about diagnosis.
“This disease is tested for in the newborn heel prick tests, but about 50 per cent of sufferers are missed,” she said.
“My sons were five and one before they were diagnosed, so we are keen to make people aware of the condition and to raise money for research.”