The RED Trail | Other
The RED Trail
Phone: +61 411 713 112
Reviews
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22.01.2022 6 years ago during , our very first $ supporting families with a bleeding disorder just like Jayden's. At just 11yrs old, Jayden said in his speech on that day, "' , ." Today and always, we will NEVER GIVE UP . .... #bleedingdisordersawarenessweek #Haemophilia #lifewithoutlimits #nevergiveup
18.01.2022 On this Autism journey, I am constantly reminding myself .... When a flower doesn't bloom, you fix the environment in which it grows, not the flower. My different brilliant may be a 'work in progress' but he sure is worth all the effort and we can't wait to see him blossom into everything he is, not what we want him to be Jayden is my amazing Different Brilliant . .... #Autism #ADifferentBrilliant #LifeWithoutLimits #ADifferentBleeder #Haemophilia Autism Spectrum Australia (Aspect)
17.01.2022 This day 5 years ago at our 2nd Haemophilia Walk where we raised just over $15,000 for our bleeding disorder community Love how these two boys with haemophilia have formed an incredible blood bond ’ , .... . #BleedingDisorders #Haemophilia #Fundraising #Inspiration
16.01.2022 - a single word we need to hear more often, especially in 2020. Here it is, the last batch of Jayden’s ‘’ supply of Emicizumab, a drug at a cost of approximately $640,000 annually, was provided to Jayden FREE of charge during his 2 year clinical study trial and a further year on compassionate access whilst waiting for it to be approved for government funding. In 5 more weeks, Jayden will transition over to the Government funded prescripti...on, thanks to the recent tender approval, thus ending the Post Trial Access Program. We are extremely grateful to everyone involved in the tender process to have Roche, MSAC and the National Blood Authority come to a mutual agreement in terms of pricing and supply to all those affected with haemophilia A, with and without inhibitors. Jayden’s first 14 years of literally, blood and tears, is now rewarded with endless opportunities. He has not experienced a single bleed or bruise in the 34 months of using this amazing drug! As his mother/carer, I can now see a much brighter future for him and his fellow haemophilia mates. I no longer live in fear and constant concern for his safety. He is just like any other teen at school. It’s onwards and upwards from here Thank you Australia We are truly blessed to be in a country that offers incredible medical care Wishing all those who are transitioning to Hemlibra the same success Jayden has had. Love, hope, faith always xx . . #Haemophilia #Inhibitors #BleedingDisorders #Emicizumab #Hemlibra #Roche #Genentech #LifeWithoutLimits
09.01.2022 One of the things boys need most from their parents for is . As your boy’s parent, there is a strong priority to focus on their emotional health to make sure he grows up to be a , - . Boys need to be nurtured and cared for just as much as girls. Their future emotional wellbeing is at stake, and once they reach adulthood, there is little to guide them.... Perhaps if tearful little boys were comforted instead of shamed, there wouldn’t be so many angry men struggling to express and empathise with emotions. . . #LoveOurBoys #MentalHealth #StrongBoys #FromBoysToMen
09.01.2022 Another young man granted access to Hemlibra, now living his life to the fullest, not just existing. Andrew and Jayden had both relapsed with their inhibitors at similar time frame and now they are both excited for their future We are so thrilled to see more and more of our young bleeders receive groundbreaking treatment that is changing their lives for the better . .... #Haemophilia #Inhibitors #BleedingDisorders #Emicizumab #Hemlibra #Roche #Genentech #LifeWithoutLimits
08.01.2022 . It is common for certain things in life to happen to you. There will be heartbreak, confusion, days where you feel like you aren’t special or purposeful.... There are moments that will stay with you, words that will stick. You cannot let these define you they were simply moments, they were simply words. If you allow for every negative event in your life to outline how you view yourself, you will view the world around you negatively. You will miss out on opportunities because you didn’t get that promotion five years ago, convincing yourself that you were stupid. You will miss out on affection because you assumed your past love left you because you weren’t good enough, and now you don’t believe the man or the woman who urges you to believe you are. This is a cyclic, self-fulfilling prophecy. If you don’t allow yourself to move past what happened, what was said, what was felt, you will look at your future with that lens, and nothing will be able to breach that judgment. You will keep on justifying, reliving, and fueling a perception that shouldn’t have existed in the first place. ! , ! . . ! . ’ . . . #NeverGiveUp #LifeWithoutLimits #DreamBig #ChaseHappiness
05.01.2022 It’s Month 34 and here we are again for Jayden’s haematology review and supply of his lifesaving drug . When Jayden relapsed almost 3 years ago, his inhibitor levels were at 4.3BU which was quite high meaning the antibodies were eliminating the Factor VIII clotting protein his blood needed to prevent and manage internal bleeds. Obviously this led to all sorts of crazy bleeds and hospital admissions. Fast forward to today and his levels are now at 0.6BU!!! We’ve succe...ssfully reduced the severity of his inhibitor by eliminating his exposure to Factor VIII (Hemlibra is a completely different product) without the need for chemotherapy or immunotherapy Such an amazing accomplishment! We cannot thank our haematology team enough for their absolute dedication to getting Jayden to where he is today. Huge thanks also goes out to all nursing staff for keeping our bleeding disorder patients safe during Covid-19 . . #Haemophilia #Inhibitors #BleedingDisorders #Emicizumab #Hemlibra #Roche #Genentech #LifeWithoutLimits
05.01.2022 Another awesome memory to look back on today Jayden’s obsession with cars and racing turned into him being a special passenger with KTM Cars Australia with Paul for the Gran Turismo Parade at World Time Attack Challenge 2017. Living his dreams with a bleeding disorder without fear Check out the newly launched KTM XBOW GTX race car! https://www.facebook.com/KTMCarsAustralia/posts/1094303310991396... . . #WorldTimeAttackChallenge #WTAC2017 #SonyPlaystation4 #GranTurismoSport #Playstation #KTMCarsAustralia #KTM #XBOW #SydneyMotorsportPark #VisitNSW #BleedingDisordersAwarenessWeek #BleedingDisorders #Haemophilia #LifeWithoutLimits
