• Supporting patients and families living with Cystic Fibrosis, through public awareness, skilled medical professionals, clinics and funding events.

  • Supporting patients and families living with Cystic Fibrosis, through public awareness, skilled medical professionals, clinics and funding events.

The story of Noo

By Ashleigh Robertson

Personal Stroies

On November 10th 1999 my husband Alex and I we welcomed our first child into the world, Courtney Jade Robertson. She was born in the UK and was a very healthy and strong baby. The first year of her life she grew well and by nine months was walking everywhere. By the age of one, this had become running.

On December 5th 2000, Courtney was diagnosed with Type 1 diabetes. We thought our world had come to an end, as our darling little girl was so sick. The months that followed were very hard for all of us, but we had to try and learn as much as we could about Type 1 Diabetes and get on with life. The first couple of years Courtney spent a lot of time in and out of hospital, and her sugar levels were erratic. Fortunately, as she has got older, it has become a little easier for all of us. When I look back at how hard it was trying to keep Courtney healthy and well, I did not realise at the time it was preparing me for what was to come with Amy, when she was diagnosed with Cystic Fibrosis.

Amy Jessica, fondly known to all of us as “Noo”, was born on September 9th 2004. Courtney was over the moon to have a sister and we were all very relieved that Amy was healthy and did not have diabetes. From day one she was a very hungry baby and would practically eat us out of house and home if given the chance. When she was six weeks old I had to add cereal into her formula milk to satisfy her hunger. Amy did well her first year and every time we went to the baby clinic they could not believe how much weight she was putting on, never mind the amount of times she went to the toilet or the smelly stools she produced after every meal. Nevertheless, she was still gaining weight and we nicknamed her our “Little Buddha”.

When Amy was a year old we sent her off to a day-care centre, but the months that followed were not good for her and she contracted one chest infection after another. Each time we took her to the doctor and after many tests and x-rays we were told she could have allergies to certain foods and we needed to pay extra special attention to her diet. We were even told she could have asthma. When Amy was two, she had a rectal prolapse, and we went back to the doctor. More tests and we were told there was nothing wrong with her.

In February 2007 we took Amy to Courtney’s endocrinologist, where he ordered more tests including a Trypsin test. I duly took Amy’s stool off to the laboratory for testing and to my surprise discovered they did not know what the test was for. I tried to contact our doctor but he was already on a plane, heading to the USA for a conference. I decided to “Google” and discovered the test was used to diagnose cystic fibrosis. It was something we had never heard of or knew anything about. However, the Internet is a wealth of information and soon I started to get a better understanding of the disease.

We waited about three weeks before results came back from the Trypsin test. When they came back we were called in to our doctor, who requested a “sweat test”. By now I was convinced Amy had cystic fibrosis and had prepared myself for the outcome. We headed off to the lab for the test, and a few hours later the results came through. The nurse read the results and told us to wait for a doctor. He confirmed what we had been dreading. We had been expecting it, so were already a bit more mentally prepared. A further blood test confirmed she has the DF508 mutation. The weeks that followed her diagnosis was crazy. Not many people could give us information on medication, physiotherapy or the treatment of cystic fibrosis. Courtney’s doctor was happy to treat her but said it would be better to see a specialist CF doctor.

Some months later, I was at our local clinic seeing our GP about Courtney and got talking to a lady I had worked with a few years before. She was now working at the clinic and I told her about Amy. She told me the lady she was working for had a niece with CF and she would put me in contact with her. That is how I meet Marie Allen and our saving grace at that time.

Marie told us all about the monthly CF clinic at Durban’s Addington Hospital, and Dr Egner. On the first Tuesday of May 2008 we headed off to the hospital to attend our first CF clinic. Two years later, all I can say is a huge thank you to Dr Egner and to our wonderful physiotherapist Mary Rudd.

Presently Amy is doing very well, and although we have our moments when she gets sick, we all work hard to get her better again. Our lives have changed drastically again, and if we are not busy nebulising Amy, issuing her with Creon, or giving her all of her vitamins and antibiotics, then we are busy sorting Courtney out with her Diabetes.

I don’t think anybody that has healthy children will be able to appreciate what we live with on a daily basis: how much hard work goes into trying to keep them healthy; sleepless nights we have; the amount of medication we have to administer and the financial burden that it puts on us, as a family. There are times when I get frustrated with people who ask me “How are you coping ?”, “How do you live a normal life ?” and even “I could never do what you do”. The bottom line is that we have no choice. For the wellbeing of our children, and to give them the best possible care in the world and as normal a life as possible, we do it and just get on with it!

Alex Robertson adds: “I would like to thank my wonderful wife who gives so effortlessly to Courtney and Amy and who really takes such good care of them. From me, your husband a huge thank you, and from Courtney and Amy, thank you mummy for taking such good care of us. We all really appreciate everything you do.”