Genetic Disorders – Cystic Fibrosis
Madison was born with Cystic Fibrosis, a genetic disease that affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus. With the new treatment options available and her dedicated team of carers, Madison has been able to enjoy a good quality of life.
“I have started writing this story many times and deleted it because I keep a lot of things to myself…
My daughter was born with Cystic Fibrosis which is a genetic disorder affecting the lungs and digestive system and causes other problems. My world came crashing down when I was told of this news, I so wanted a doctor to tell me they had made a mistake but they had not.
My angel was born 5 weeks early weighing 1850grams which dropped alot during her 7 week stay in the NICU unit at the womens and childrens hospital in Adelaide (we are from Darwin NT), so we were first time parents and were along way from home family and friends. We had no idea about the road ahead for us.
Madison’s bowel was blocked at birth so she couldn’t poo and we could not even feed her, so my experience of breast feeding was with a express pump for 6 weeks. Madison had 3 surgery’s before she unblocked. She had to wear a colostomy bag which she pooed into and I would change. It was kept hidden under her clothes so people wouldn’t stare at her and ask me questions.
After 3 months the procedure was reversed and successful. I was so happy for her!
Now Madison has physio 2-3 times per day depending on her health and the clear thick sticky mucus which builds up in her lungs causing lung damage, she also takes Enzymes everytime she eats to help her digest her food.
We were told her lifespan is approx 30 years depending on her lungs, then she will require a lung transplant. I am crying as I write this, I just want to make this go away and for her to be healthy, but I must say she is now 3 years old and the happiest little girl, nothing gets her down not even hospital visits, where we can be there for up to 3 weeks at a time… the nurses love her. But the research is getting really good and I hope there will be a cure soon. So if you’re reading this please help Huggies support jeans for genes day and help all our little angels out there live longggg and healthy lives."
For many years Huggies has supported Jeans for Genes and to help encourage everyone, including babies and toddlers, to get involved. By purchasing Jeans for Genes merchandise you help us to raise awareness for Jeans for Genes Day and help to find a cure for genetic diseases.
Huggies would like to thank this mum for bravely, and generously sharing her story. We sincerely wish our best to you all.