- Every family faces loss through natural attrition
- of age and through accidents.
- Some families also face loss through genetic diseases such as Cystic Fibrosis (CF). My aunt and uncle, Jill and Des, discovered they were carriers. One in 25 people carry the gene. If they marry, there is a 1 in 4 chance their child will have CF. We hope for a cure.
Michelle lived 3 days. She was born in 1972. We didn't know CF caused her death.
Elmira was born in 1975. She was 5 months before she was diagnosed. She was cheeky and very bright. She died at 5 years.
Rhelma was born in 1983. She was artistic and played the harp. She died at 16.
There was a 75% chance Rhelma would be healthy.
Jill and Des have a healthy son who was born in 1973. He is a carrier but his wife isn't. They have a healthy little girl.
See Jill's message below
- Elmira's Story
- by Adrian McGregor
- (Warning, sad but up-lifting.Thanks to Adrian Mcgregor for permission to use this article)
ARE YOU A CYSTIC FIBROSIS CARRIER?
Every 1 in 25 people is a C.F. carrier and is usually VERY HEALTHY, so you never know you carry this lethal gene until you are confronted with a child who has C.F.
Before anyone enters parenthood they should be tested to see if they are a carrier of the C.F. gene.
The latest test involves a mouth swab and Victoria is leading the way in Australia by encouraging and promoting C.F. testing of all childbearing adults in that state.
Even if you have had 1 or more normal children it doesn't mean you are safe to contemplate another pregnancy - one family had 5 normal children then number 6 and number 7 had C.F.
C.F. is the most common genetic disorder in Australia and costs the government millions of dollars to treat yet now with modern technology this disease is to a degree PREVENTABLE. The present tests cost approximately $200 each - a small price to pay for peace of mind.
Where 2 carriers meet and marry every pregnancy has a 1 in 4 chance the child will have C.F., a 2 in 4 chance the child won't have C.F. but will be a carrier, and a 1 in 4 chance the child won't have C.F. and won't be a carrier.
Since 1983 all newborn babies are tested soon after birth via the healprick test to see if the child has C.F. but the test does not tell you if the the baby is a carrier. Most women are not even aware their baby has been tested, nor are they aware of what C.F. is, and it is not until a positive test results in a call for a woman to go to her G.P. for a consultation that the reality of this horrible disease becomes the start of a very traumatic experience.
Statistics for divorce are extremely high with latest reports going so far as to say 90% of marriages come to grief because of the effects of caring for a C.F. child.
IF YOU ARE CONTEMPLATING HAVING A CHILD OR KNOW ANYONE WHO IS, I STRONGLY RECOMMEND THAT YOU GET TO YOUR LOCAL DOCTOR FAST AND BE TESTED TO SEE IF YOU ARE A CARRIER. YOU MAY WELL BE SAVING YOURSELF A LIFE OF GRIEF AND HEARTACHE BEYOND DESCRIPTION.Sincerely, Jill
