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Mates of Jack

Phone: +61 448 293 110

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25.01.2022 We are so proud of Jack! Jack is the successful recipient of a Western Cape College School Spirit Scholarship! In his application he had to explain how he had shown school spirit, examples of his contributions to Western Cape and why he should be awarded such a scholarship. For a young man with a life limiting disability he is putting the best of himself forward, he wants to be included and fights for others to have the same, he is a valid member and always has pride in who he is and his school. He is so casual about it, but as parents we truely cherish his accomplishments and couldn't be happier that he strives to achieve and succeeds!!

24.01.2022 Jack had such a wonderful 13th Birthday, with over 70 Celebration cards wishing Jack love, strength and sending support. What a Champ effort Mates of Jack. Thank you, Thank you, Thank you. Jack reckons if he went to London he would be famous. He recieved numerous international birthday wishes and special thoughts that is was overwhelming. We saved them up and on the morning of his birthday watching him open them one by one and read all the kind words and knowing that others h...as so thoughtfully sent these to him, was a pleasure to watch. His sisters were in awe and could not help commenting on how lucky Jack was, and how famous he must be, and how so many people love him and care. He even generously recieved nearly $700 in gift money and has diligently banked this towards his savings for a much wanted laptop. From us as parents, we sincerely appreciate everyones thoughtfulnes and your willingness to go out of your way to bring so much joy to our Son. From Jack - Thank you for making me feel special and making turning 13 and epic milestone. xxx See more

23.01.2022 Dear Mates of Jack, I feel like I have fell off the page! lol Since October to now it has been very busy and crazy and during that time I have made numerous attempts to update Mates of Jack but failed. Started and ran out of time due to childrens demands or went to post and it failed. (like now, this is attempt #3, ahhh) We have celebrated Jack turning 13. Jack graduated Yr7 Jack gave an awesome welcome speech to the YR6 classes welcoming them to High School.(So proud)... We enjoyed the school holidays with a trip to our favourite Station on the Cape - Bramwell. Jack had 2 pet pigs (Peppa & George of course) that he fell in love with! We made it to the Tip of Australia (Jack was 7 last time we went and he even made the walk out to the Tip, not this time) We went 4WD on the old telegraph track and really enjoyed the adventure. We traveled to Cairns for medical treatment Jack traveled to Bundaberg to Visit and enjoy extened family time Miss Millie has given us 3 new puppies to love and cuddle and Jack is now trying to keep them all. lol Jack has started YR8 Jack has lost his ability to WALK - the short distance he can manage is with full support. New limitations and obsticles and we are now on a new journey of building a home that is suitable for his needs. I knew that Mates of Jack provided me with a way to connect and share, but I didnt realise how much I have missed you all. Duchenne is a heavy weight to endure and we are very grateful to have your support and love. Thank you Mates of Jack. See more

23.01.2022 Hello Friends! Jack is doing as well as he could be. He requires a lot of help and assistance within everyday but he is a champ and takes it all in his stride. He is busy, enjoys his hot rods and classic cars, makes us laugh and is the best teenager - can’t get into to much mischief but he doesn’t allow that to stop him being cheeky. Hello to everyone who thinks about him often and just an up date that Jacko is doing well.

21.01.2022 This picture came up on my FB page. How handsome is my little Jack! He was 3 and enjoyed getting in on the action, fishing - poking at them and watching them get cut up! He can't go fishing anymore but we certainly made sure that for as long as he could he did. He has many stories and memories and for that - I appreciate my husband and the effort he has always made to help Jack enjoy the outdoors.

20.01.2022 The day Jack was born the front page of the local paper read "Jack is Bundy Bound" (it was advertising Johnny Farnham lol) and the next morning the streets of Bundaberg were filled with butterflies, hundreds and thousands of them! It has always felt like Jack was special and the world knew it before we did. He is the most kindest and generous young man and as much as we teach and guide him as parents his heart is his own and Our family couldn't be prouder to call him our Son, our brother, our nephew, our grandson and Mates of Jack.. our friend. If you see Jack today please take the time to tell him how you feel about knowing him, he deserves to feel on top of the world today! Happy 13th Jack Michael!

20.01.2022 Medical check up says Jack is doing as best as he can be. Was a quick trip but got to go to the museum, walk Southbank, go on a city cat and enjoy some yummy meals together. Jack with his Uncle and he enjoyed seeing Aunty Erica too.

18.01.2022 When you ask, "how can I help, what can I do?" The answer my friend, is not in the wind but in action! Please, if you can, sign this petition. Let's help turn NO into YES - living at the best quality one can is something everyone should have the opportunity to enjoy! Thank you https://www.change.org/p/united-states-congress-the-fda-sho

14.01.2022 Quick Look at Jack over the School Holiday Break

09.01.2022 September 7th is Duchenne Awareness Day! Jack is nearly 15 and DMD is such a cruel disorder. We love him so much and any awareness we can bring ~ may one day help provide relief to those who have to fight Duchenne Muscular Dystrophy.

03.01.2022 The "In Memory & Hope of" Flag for Duchenne Muscular Dystrophy flew high in the wind off the top of Mt Everest. To know that Jack's name is on this and carried with such love, dedication and determination brings an ache to my heart that is soothed by the smile on my face. Thank you to the team for this marvellously astonishing achievement.

01.01.2022 Yesterday was a sad and disappointing day for the Duchenne Community - The FDA had a Drug presented to them that could help a large volume of boys with Duchenne with retaining their muscles condition. This is not a cure, but specifically this Drug would of been suitable for Jack and the outcome of him using it would mean that his loss of mobility and life threating weaknesses would be reduced and held off for a lot longer increasing his life span!! Even with evidence and near...ly a 1000 strong standing before them they have DENIED our sons, us as families a chance!! As put by a fellow fighter: DENIED and devastated!!!! After an emotional 12 hour day including hearing testimony from 51 children, parents, doctors and clinicians - the FDA advisory committee voted AGAINST accelerated approval for what would be the only approved drug for Duchenne. The room ignited into an uproar with screaming parents, crying boys who testified in the trial and the rest of us brought to tears of anguish as we watched the FDA and its "advisory committee" callously provide negative feedback to a 4 year trial with positive outcome measures and a carefully crafted hearing preparation that took months. The boys who are participating in the trial are now able to do physical activities they thought they had lost, had to hear from a group of external "experts" that they were not satisfied with the trial and how it was controlled, nor convinced of the benefits. Never have I witnessed a scene of outrage before, until a wheelchair bound DMD boy who has benefitted from the trial, zoomed his wheelchair down the aisle towards the committee in a rage, while crashing into the barrier. The outcome left us all shocked, numb and with a loss of faith. Seeing the boys in tears was heart-wrenching. Faith that there will be a Cure or a chance for Jack to have a normal life is hope that I struggle to have. But I think I under estimated my own HOPE and reading what has transpired and knowing that this could have HELPED JACK..... Heart wrenching it certainly is. I do have HOPE and I do want a chance.. difficult to understand why anyone would deny such!

01.01.2022 Duchenne Awareness Day! I know I was thinking of all the guys with duchenne today but I also thought about all the families that are effected - the Mums, Dads and siblings! Duchenne does not just take hold of the suffer but attacks the entire family. Awareness, funding, science, medication, therapies.... it helps more than just the individual, it helps the village that supports and carries the load of Duchenne as well. Thank you to those who help us carry the load and always share their hearts with us and our Jack!

01.01.2022 If I was to write the very thoughts that passed by myself - at times I am not sure I would recognise who I am! We have moved to a new level - and the pressure, the need.. It is overwhelming and what scares me most.... We are only at the beginning of a hill (scratch that, a mountain) that is all down slope.. including straight cliffs and big boulders. Sometimes I want to jump! It is a split second thought, but it haunts the mind that such a thought could even pass. Can we make... it? Can I survive? Will I have a husband? Will I have my daughters, will I be me? What is the end? Is there an end? Do I want there to be an end? Everyday, every fucking day is a battle of strength, lack of, guilt, want, need... How can something beyond blame, be to blame?! There is not enough words to explain the overwhelming feeling of drowning, there are no actions to release such burden, it is dark, there are tears and there is tomorrow! See more