Genetics unkind to Amy

FOR 21-month-old Amy Ross bouncing on the bed isn’t just fun - it is therapy to help cope with the effects of cystic fibrosis. TC310708DT01

BY DEAN TAYLOR

Two years ago Genaia and Hamish Ross were excitedly awaiting the birth of their third child. Little did they know that as carriers of the cystic fibrosis gene their new baby was going to be born with the disorder that would change their lives.

The Ross’ had two healthy children — Hayley (now eight) and James (now three) — and Mrs Ross had taken steps towards becoming a midwife as a new career after she gave birth. She says when she got the call from medical staff saying Amy wasn’t thriving panic set in.

The diagnosis meant she has been a full-time nurse to her daughter and she thought her life and dreams for a career were over.

Yesterday was the start of Cystic Fibrosis Awareness Week — a chance for the public to find out more about New Zealand’s most common genetic disorder, which affects one in every 3500 births, and how they can help sufferers live better and longer.

The cystic fibrosis gene was discovered in 1989. It is a European disease which is thought to have evolved in the fourth century during a cholera outbreak. All cystic fibrosis sufferers are immune to cholera. Mrs Ross says that is little compensation for suffering from a disease which creates ongoing and life threatening problems.

People with cystic fibrosis have a life expectancy in the early 30s, although the Ross’ are pinning their hopes for Amy on more and better research extending that.

The condition causes serious lung problems, because of a continuous build up of thick mucus, with the secondary condition being digestive problems. The mucus is an ideal breeding ground for bugs, so sufferers are also susceptible to infection. Amy is on daily medication, including enzymes to aid digestion, and has twice daily physiotherapy, such as chest massage and bouncing exercises, to shift the build up of mucus off her chest.

Help for families and sufferers is via the Cystic Fibrosis Foundation which operates throughout New Zealand. In the Waikato there are know to be 18 children and 19 adults with the condition. Mrs Ross says the families of the children are most active within the Waikato organisation and most are running fundraising activities. In Te Awamutu there is a sausage sizzle this Saturday at The Warehouse. As well there will be egg and bacon butties for sale and a cake stall. Local hip-hop dance group Imperious will perform weather permitting.

The Ross’ are also taking bookings for family photographic sittings at $15 each in their home on Saturday, August 16. The Portrait Company will donate proceeds to the Cystic Fibrosis Association. To book contact Mrs Ross (870 6233 or 021 02791440).