A Big Monster Couture Surprise!
Cocoon Couture recently gave away a special prize on the Cystic Fibrosis web site and the lucky winner was little Saxon who is now 5 years old and lives with Cystic Fibrosis.
Saxon was able to choose which bean bag he liked and picked out the cheeky Bat Star Monster Couture bean bag straight away!
 
A very surprised and excited Saxon upon opening his Monster Couture bean bag prize!
Happy customer road testing his Monster Couture Bat Star bean bag .
Cocoon Couture is a proud supporter of the Cystic Fibrosis
Foundation.
On this Friday 28th May 65 Roses Day is the annual
national awareness day for Cystic Fibrosis in Australia.
This special day was named after the folklore story of a little boy who
could not pronounce his sister's condition, Cystic Fibrosis, and instead
called it "65 Roses".
I would like to share Saxon and his familie's story with you in the hope that this can shed a little more light on what it is like to live with Cystic Fibrosis.
Saxon's Story
Saxon was diagnosed at 4 weeks of age, through the standard "heel prick" test done soon after birth. It took 4 weeks for us to be notified as they re-test if a positive comes back & make absolutely sure before they break the news.
We were led to the "Quiet Room" at the maternity ward and there we were given the devasting news that would changes our lives forever. Initially we didn't know what Cystic Fibrosis was and my husband thought they were talking about Cerebral Palsy. I remember feeling a huge sense of grief & still do to this day, grieving for the loss of the "health" of my baby boy.
Saxon has to do his PEP mask everyday and twice daily with a cough, he has to take pancreatic enzymes before he eats any foods containing fat, he has to be careful of "yucky/stagnant" water for fear of Pseudomonas a bug that is every CF parent's nightmare and he has to keep away from people with coughs.
I never have CF out of my mind. Every time we go outside I scan the place for stagnant water, puddles etc. I have a "cough" alert and can hear any cough nearby and will know exactly who has it so we can avoid them. This is getting tricker now as this is his first year in school. I feel like at the moment I am putting him in the Lion's den when I take him to school, as right now there are a few kids with coughs.
Always on my mind is to keep him active, it is important for him to keep active so that if there is extra mucus sitting on his lungs. For example, time on the trampoline can move it, so it will not sit there and create a dangerous infection on his lungs.
Saxon has so much life and energy in him and inspires me every day to make the most out of life. There is one thing I have learnt from those with CF, live your life today as you never know what tomorrow brings. Thanks to my little guy we "live" every moment.
All raised funds through the Cystic Fibrosis Australia go towards valuable research projects and support services for
children and young adults living with CF. Help us make CF stand for Cure
Found!
Cocoon Couture would like to thank Saxon and his family for sharing their story.
xx
|
