Madison's mum Paula shares their story:
Our daughter Madison is ten years old. She was born healthy and well and we settled into life as first-time parents. When Madison was 5 weeks old our lives were turned upside down by a call from our Midwife. The heel prick test came back positive for Cystic Fibrosis. We then had to have further tests at the hospital and Cystic Fibrosis was confirmed. Receiving the news that our perfect baby had a life-threatening illness was absolutely heart breaking. We then had to learn all about Cystic Fibrosis and how to care for our daughter.
Immediately from diagnosis we had to perform percussion physiotherapy twice a day to help loosen the sticky mucus build up in her lungs. Once she turned 5 her physiotherapy changed to doing airway clearance through a nebuliser while breathing in a salty saline solution. This takes around 20 minutes a session. She often also has to nebulise antibiotics for 2-3 months at a time, this is on top of her usual twice day physio and takes an extra hour a day. Regular exercise is also really important for people with CF so Madison is encouraged to jump on the trampoline at home, walk the dog and play ball games. She also plays cricket in the summer, netball in the winter and swimming. She has been dancing since she was 3 years old and loves it.
Madison also needs to take a substantial amount of medication on a daily basis. This consists of vitamin supplements, drink supplements for weight gain, antibiotics, ventolin and a pancreatic enzyme replacement called Creon. Madison needs to take Creon every time she eats with the amount required varying with the type of food she eats. Her diet needs to have extra salt to combat sodium loss and fat in order to maintain weight. Even though she has Creon, she regularly suffers from stomach pain.
Due to all these extra things, time is a luxury in our household. Madison does not have the time that other children have. Play time or leisure time is rare on a school day and she gets very tired. It is a constant juggling act between trying to “normalise” Madison’s life and keep her safe and well. People with Cystic Fibrosis are vulnerable to specific bugs and bacteria. Some of these bugs thrive in environments such as soil, dirt, stagnant water and compost. These bugs are also easily transmittable, therefore people with CF cannot come into contact with each other due to the risk of cross infection. There are activities at school such as gardening and other environmental activities that Madison cannot take part in to reduce her risk of illness.
Madison has at times over each of the last 4 years also required hospitalisation to receive iv antibiotics to eradicate lung infections. IV’s are administered for a minimum of two weeks. This impacts the whole family and means time off school, time off work and being available for Madison’s younger sister.
If Kalydeco was approved in New Zealand, it would be life changing for Madison. Kalydeco fixes the underlying cystic fibrosis defect, effectively turning off CF. It alleviates many of the symptoms of CF and lung damage is halted. This prevents many health issues arising. For Madison, this would mean less time off school for hospital appointments, sick days, a reduction in hospital admissions and less time away from family. It would likely also mean she would not one day need a lung transplant.
As a family, we are extremely committed to ensuring this life saving drug is funded in New Zealand. People like Madison do not have time to wait. We need this now.
Madison loves dancing, and exercise is so important for people with CF!
Photos of Madison, aged 8.
