I seldom talk about private or family matters on Paisley St Claire but my family has recently been through something that I would like to share.
A couple of months ago, my 3 year old daughter displayed some quite disturbing symptoms that are not commonly seen in small children. Unfortunately, it turns out that the symptom is fairly common for suffers of Cystic Fibrosis. Alarm bells began ringing for us because CF is the incurable genetic disease which had claimed the lives of two of my husband's cousins. Cystic Fibrosis is a degenerative condition that affects many of the body’s systems, in particular, the body produces abnormally thick, sticky mucus that clogs the lungs and leads to life threatening infection. The pancreas is also impaired, preventing the release of enzymes needed for the digestion of food. Suddenly we wondered whether my daughter's asthma was actually CF.
We waited for 2 weeks for my daughter to be able have a sweat test (CF sufferers have high levels of salt in their sweat) and another agonising week for the results. My heart broke the day the doctor told me that her test was positive. I knew there was still hope - they always use 2 sweat tests to confirm a positive diagnosis of CF. However, the realisation that if my little girl had this disease, she was really only expected to live until her 30s was truly devastating. From that moment my family's future became so uncertain. Everything else seemed so insignificant. As a mother, I struggled to understand what this would mean, what would I have to do to look after her? What would happen to her? At the same time, I was grateful that we might have 30 years with her when some parents don't even get that much time with their sick children.
We moved on to more tests - a genetic screening blood test to see if she carried any of the most common CF genes - the test covers about 90% of the gene mutations. Two weeks later the results showed that she did not have any of the common CF genes. This was a good result but still not conclusive. So then another sweat test. We spent the Easter break still wondering whether our daughter had this disease, everyday becoming more and more convinced that she did. And finally the news we had longed for - her second sweat test was negative. No Cystic Fibrosis.
My husband and I feel incredibly grateful and blessed that our daughter will be ok. Sadly, so many people are not so fortunate. I now know how it feels to face a future in which your child is likely to die early. For diseases like CF there is no cure (yet) but the advances in treatments mean that sufferers are able to live longer and longer. The only thing I can do to help is to donate money.
So, from today until the end of May 2010, I will be donating the total sales amount (excluding shipping) from all sales through my website and etsy store to CF Australia. If you have ever considered buying one of my accessories, now would be a great time or perhaps look up your local CF organisation and make a donation. In Australia, the annual national awareness day for CF, 65
Roses Day will fall on Friday 28 May 2010.
Visit these websites for more information about Cystic Fibrosis in Australia, United Kingdom, United States, and New Zealand. In all of these countries, CF is one of the most common life-threatening, inherited diseases and yet most people know very little about it.
My sincere thanks to my family and dear friends who supported us through this difficult time.
j.
