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Team Simon Foundation For Cystic Fibrosis

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25.01.2022 Representing Cystic Fibrosis in the 2020 Jeans for Genes Campaign is our CF friend Charlie Banjo. Help support a great cause and the fight against children’s genetic diseases.

22.01.2022 Jeans for Genes Day this Friday 7th August

18.01.2022 Flashback to 2018 when we were interviewed by #smoothfm for raising vital funds and awareness for #radiothon2018 #westmeadchildrenshospital thank you @dylan_daoud for the recording.

18.01.2022 2020 has been thus far a very challenging year for most of us. Allowing Simon to return to his all time favorite sport was somewhat tricky. The fear of the unknown is always the hardest. In saying that we couldn’t be more happier and prouder of Simon’s achievements this year. The boys didn’t end up with a grand final finale. The good times, the friendships and the laughs are all that matters. Better luck next year boys.

16.01.2022 So proud of you Simon. We have a future physiotherapist on our hands. A shout out to Anna and the team for always showing the way.

15.01.2022 With the current events happening today it’s clear to say society as a whole is getting a true glimpse of a day in the life of someone suffering from Cystic Fibrosis. Getting bored at home, thinking about what else you could be doing right now. Welcome to the world of Cystic Fibrosis. The Cystic Fibrosis community knows exactly what it’s like to practice social distancing and most importantly to isolate. ... Cystic Fibrosis patients are part of that number who are most at risk with this pandemic, in saying that we are the most prepared to handle this situation. You may ask why is that? Being extra careful around sick people especially during flu season, washing hands, wearing masks, social distancing are just a few of the things that we live with on a daily basis. As parents caring for a child with Cystic Fibrosis we have always wanted to shed some light about what it really feels like to be in this fight. Well here it is. Like the rest of the world we are now facing the most challenging times ahead. It’s not going to be easy and for many of us we know what it’s like to have lived days, weeks even months in isolation. As a society we need to accept that this situation is what it is. Things will get easier it just needs time. Use this enforced time to appreciate the little things in life. Days, weeks, months go by so fast we take for granted what’s around us. Try make use of your time with your loved ones, pray but more importantly listen and follow the rules. There is light at the end of the tunnel we just need to be patient and believe in God. We kindly ask, when all of this is over please remember to continue these simple steps, teach your children at a young age that what we do in our daily lives does impact the lives of so many around us. Keep safe, stay home, and help protect everyone from exposure to COVID-19. God bless

13.01.2022 #cherishingeverymoment Simon with his newborn sister Veronica.

13.01.2022 FLASH BACK TO 2019 What a phenomenal year that was. As a team we raised a staggering $81,108.88. Thanking each and every one of you for your continued support.... God bless See more

12.01.2022 Simon you wake up today fighting the same battle that you left the night before, and that my little man is bravery. Today you turn 7 and that breath you just took that’s a gift in itself. We have so much to be thankful for today. 7 years ago we were blessed to have you apart of our lives. Your illness will never define who you are, your strength and courage will. Happy Birthday Simon! We are so proud of the young man you are today. Keep smiling and remember the sky is the limit. always your no 1 supporters Mummy, Daddy, Savannah, Noah & Veronica

11.01.2022 Cystic Fibrosis brings with it many complications. When you think your ten steps ahead of your game you end up ten steps back within a blink of an eye. Simon’s recent drop in lung function accompanied by his increase in cough has meant Simon requires a tune up. Simon will receive IV treatment alongside a strict physio regime to help reduce the secretions off his chest. ... So for now the hospital will be our home away from home for the next couple of weeks. Praying for a cure

10.01.2022 A little glimpse into some of Simon’s daily medication. There is no one rule that fits all. The complexity of the disease means medications and treatments differ from person to person. Praying for a cure

09.01.2022 BLOOD TESTS| I think it’s fair to say most of us don’t like the idea of having a blood test. The thought of a young child having a blood test has to be one of the most terrifying yet traumatic experiences. The level of anxiety, the increased sweat, the level of panic, the tears, the screams are just some of the things Simon has had to endure over the years. Fast forward to today - look how grown up he is. At the age of 6 you can still see the level of fear in his face, but being the true solider he is, he has managed to conquer one hurdle at a time.

08.01.2022 New Years Resolutions The question that always gets raised before and after the lead up to New Years. Some people may set unrealistic goals where others just hope and pray for the best for 2020. What does 2020 mean for us?... I think it’s clear to say as carers we get so caught up in the daily grind that we forget about ourselves. Some may say it’s selfish others may say put your needs first. I say why not make 2020 the year where we try to take time out, to try make time for ourselves and to continue doing things with a smile. The key word here is try, life will never be perfect and life will always bring with it the ups and downs. We can only be hopeful and pray 2020 brings with it much love, happiness, success and in our case a cure for CF. C - Cheers to the Y - year ahead S - and T - try make I - it the year for a C - cure F - for the ones we I - in faith we B - become hopeful and R - remember to remain O - optimistic - it will always be hard and S - sad but I - in the end our S - sacrifices will help shape the future of our children #happynewyear2020

07.01.2022 Merry Christmas from our little elf Simon.

06.01.2022 CHEF SIMON| Today Simon cooked up a storm in the dietetics kitchen. The aim of todays exercise was to try introduce new foods and encourage Simon to eat all different types of food and vegetables. Great job today Simon

05.01.2022 Simon didn’t think he would make it for his school end of year concert tonight. He kept asking the doctors during his admission will I be out of hospital for my school concert, I’m Santa. We’re so proud of you Simon. No one would of ever picked you were absent from school for 3 weeks. You nailed it.

03.01.2022 TEAM SIMON TIP| This is a baby bottle drying rack can be found in most baby stores. We have found, that this is the best drying tool for Simon’s nebulizer equipment. If your finding your equipment isn’t drying enough throughout the day this little gadget works a treat.

03.01.2022 IMPORTANT NOTICE| In line with the recent COVID19 outbreak our upcoming gala event has been cancelled until further notice. Please keep safe and keep our country in your prayers. God bless

02.01.2022 Having Cystic Fibrosis comes with it many complications. One of those is bowel obstruction. The symptoms are very similar to constipation they include: - cramping abdominal pain - bloating - hard stools - reduced bowel movement... - loss of appetite - nausea/vomiting Most of the time treatment can be done at home with taking laxatives such as Osmolax. So for now we keep up with the fluids to eliminate dehydration and fingers crossed avoid hospitalisation. See more

01.01.2022 Between infections, an increased cough, nausea and poor appetite it has meant Simon has had a drop in his weight. Maintaining a healthy weight and increasing it is the key to fighting infections and keeping his lungs and body strong. So the aim over the next week is to EAT, EAT, EAT and try introduce foods/shakes they will help build up those calories.