Let me tell you my story...
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My name is Emilia and there are so many things that make me special, my laugh, my smile, my ability to light up a room, the love I show my family everyday but there is also something else special about me. I am 1 of roughly 3,500 people living with Cystic Fibrosis (CF) a genetic disease currently with no cure, that affects a person’s lungs and digestive system. People with CF develop abnormal amounts of excessively thick mucus within the lungs, airways and the digestive system. Over time, this creates problems by trapping harmful bacteria which can cause infections and irreversible damage.
My day to day is not like someone else of my age, lots of my day consists of clearing that sticky mucus from my lungs, physio, medicines and a special medicine called enzymes that I take every-time I eat. I also have a special team of people who look after me and my treatment, aside from my mummy and daddy I also have a doctor, nurse, physiotherapist, dietician and pharmacist. I visit these amazing people roughly every 2 months at Westmead Children’s Hospital in their Bandage Bear Clinic. They have been there since my diagnosis when I was only 3 weeks old and help to make sure that I am getting the best possible care.
Jeans for Genes goes directly into funding The Children's Medical Research Institute who research childhood genetic diseases, cancers and treatments.
This year I am lucky enough to be an ambassador for Jeans for Genes. My hope is to raise awareness of many genetic diseases and cancers and tell my CF story.
Tune upCF patients will often need to go in for an annual “tune up” with IV antibiotics prescribed. If this procedure becomes more consistent, a port may be inserted into their chest for easier IV access. Emilia had her first tune up and hospital stay in March, after she had the bacteria pseudomonas. She thankfully for now is all clear!
Meeting researchersMeeting amazing researchers
My trip to CMRIToday I had a very special experience. After clinic, I got to visit the Children’s Medical Research Institute and got to meet a very special researcher and got to meet some of the amazing scientists who are working hard to research childhood genetic diseases and cancers and of course Cystic Fibrosis. As a Jeans for Genes Ambassador I had been given a very special invitation that I could not pass up. Associate Professor Leszek who leads the CF research team along with Julie Lam Jeans for Genes Community Fundraising Manager were amazing enough to show mummy, daddy and I around and explain to us the incredible work that is being done not just for Cystic Fibrosis but all genetic diseases and cancers. All money raised during events such as Jeans for Genes go to helping fund their research and without funds could not be carried out. I would not have the diagnosis I do, nor would I have the medications and support in place if it was not for the work of Professor Leszek and his team and my incredible CF medical team at Westmead. I had the best time and look forward to visiting again.
How Cystic Fibrosis affects the lungs
Emilia growing upLook how much this little warrior has grown! Changing every single day and growing stronger and stronger. Thanks to the research by CRMI and her Cystic Fibrosis team at Westmead Children’s hospital
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