Charlie's Hope in Perth, Western Australia | Blogger

Charlie's Hope

Locality: Perth, Western Australia

Phone: +61 427 785 339

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24.01.2022 Duchenne may be a rare disease, but it’s probably more common than a lot of people realise. Around 20,000 boys are born with Duchenne Muscular Dystrophy worldwide per year, which works out to 54 per day, or one every 27 minutes. Despite this it's still a disease which many people have never heard of, and therefore receives little funding. If we are to find treatments and cures in time to save the current generation affected by Duchenne THIS HAS TO CHANGE! This also doesn't include the extremely rare 1 in 50 million girls, manifesting carriers with symptoms so severe they are classed as having Duchenne, with just 1 or 2 births worldwide per year.

22.01.2022 Please come along and support a great cause and have a fun filled night . You don’t need to wear your wedding dress you might have a bridesmaids dress you want to wear again or just a nice gown that is hanging in your cupboard you purchased for a special occasion. I can guarantee the night will be filled with great company, music, food, wine, laughs and a prize or two.

21.01.2022 Charlie Henrik Mone #hope #strength #courage #awareness #education

21.01.2022 #raisingawareness

19.01.2022 Week 4 - Charlie Batting

19.01.2022 Our friend Charlie is getting use to being in front of the camera after Sunrise visited the Perth family for their Feel Good Friday segment. Charlie’s wish for a robot to defend his room was made possible thanks to so many people coming together to make a dream a reality.

18.01.2022 Please share & follow www.facebook.com/fightingforcharlie

18.01.2022 Save Our Sons wish all the fathers in Australia a Happy Father’s Day, especially the Duchenne and Becker dads. May you have hope in your hearts and strength of ...spirit. Tomorrow is World Duchenne Awareness Day, so let’s work together to raise awareness of Duchenne and Becker muscular dystrophy and continue to do all we can to achieve a cure. We hope that the Duchenne and Becker community across the globe unite tomorrow so that together we have a louder voice and can achieve so much more. Together we are stronger. - Elie and the Save Our Sons team. #SOSDuchenneFoundation #saveoursons #Duchenne #Becker #musculardystrophy #fathersday #togetherwearestronger #WDAD2020

17.01.2022 Chris is an absolute inspiration, he and his brother Aaron have done so much for the DMD community, raising awareness and funds to fund a cure that this community needs. When you think your life is tough because you have had a shitty day think of this post. Be grateful for each and every day

16.01.2022 Please come and support a great charity event

16.01.2022 Charlie is so blessed to be surrounded by some amazing young men he calls his best mates. One gorgeous young man dropped in this morning with a little pick me up after he heard about Charlie’s big fall on Friday. Zion you are truly a wonderful friend to Charlie.

16.01.2022 To all our friends and family could I please ask you to share Charlie’s red ballon as your profile photo to spread awareness of his condition for the month of September or on the 7 th day of September, which is World Duchenne Awarness day. Let’s turn Facebook red with this ballon. The 7th day of the 9 month represents the 79 exons of the Dystrophin gene were an error occurs and results in Becker or Duchenne Muscular Dystrophy. Please spread the word to promote awareness for this life limiting condition so close to our hearts. Thank you from All of Charlie’s family

15.01.2022 Outside almost complete, just one thing to add inside Please share & follow ... www.facebook.com/fightingforcharlie See more

15.01.2022 Well that’s a wrap for our second Wedding Dress Ball Perth. Thank you to everyone that came and supported us in raising funds for Muscular Dystrophy WA you all... looked stunning We had an amazing night, here are some sneak peaks! Can’t wait to see the official photos from Sev's Weddings To all the great vendors that donated their time on the night and businesses that donated raffle prizes, thank you so much for supporting us. The venue was perfect, the room looked stunning, the music was pumping, the photobooth was full of glam and laughter and the photography will have got everyone looking spectacular and created lasting memories Once again, from myself Lisa, and Jess we thank you from the bottom of our hearts for everyone that was part of this and we hope to see you next year! Bring on #weddingdresscharityballperth2021 Our supporters, and on the night vendors and raffle prizes were kindly donated by: Wildflower Home Kitchen Forever After Weddings & Events Centrepieces HQ - Affordable designer Centrepieces & Event Decor for Hire ENVY Event Group Dunn events @Sevs Wedding Sonic Entertainment Tim Preston Mulberry Estate Novotel Perth Langley Mercure Hotel Perth steven khalil Dingo Brewery, Brew on Premises Micro-Brewery formally U Brew It Midvale, RAEH Flowers Steam Haus Winky Lash Starlet Concepts JT Makeup & Beauty Beauty At Aveley Labyrinth Art Rustic Chix Knot About You Viva! Life Photography Blu Moon Creations Patrick Willson Golf Coaching Brett McPherson Chantelle Toohey The Mango Twins Charlie's Hope - Fighting For a Cure - Duchenne Muscular Dystrophy Muscular Dystrophy WA Photo credit Sev’s Weddings - our on the night photographer

13.01.2022 Charlie turned 11 recently How much do you know about Duchenne Muscular Dystrophy? A devastating genetic disorder, it slowly robs it's victims of the ability to walk, move and even breathe independently. It's the largest genetic killer of young men, yet many people have never heard of it.... Here are 10 facts about DMD, which we hope will be shared to help raise awareness. 1. Duchenne is classed as a rare disease, affecting 1 in 3600 boys. 50 baby boys are born with DMD in AU every year. It affects 300,000 worldwide. 2. Duchenne is a disorder of the Dystrophin gene, the largest protein-coding gene in the entire human genome. There are 79 exons on the Dystrophin gene, just one mutation in any one of these exons is all it takes to cause Duchenne. 3. Those with Duchenne are unable to produce Dystrophin, a protein essential for the stability and repair of muscle cells. Without it, every muscle in the body will eventually waste away. 4. Those with Duchenne usually appear healthy at birth, but often struggle to meet developmental milestones. They struggle to run and climb stairs like healthy children and fall often. The typical age of diagnosis is around 5 years old. 5. Walking ability is typically lost between 8-12, with a strong decrease in arm function generally occurring between 10-16. Those with Duchenne are not expected to reach their 30th birthday, in fact some don't even reach their 20th. For some this decline may occur sooner, while some children with Duchenne may never walk at all. 6. Unlike most disorders, Duchenne occurs across ALL races and nationalities. 7. Not all cases of Duchenne are passed on by carrier females. Around 35% of cases are caused by a spontaneous mutation with no previous family history. Quite simply, it could happen to any family. 8. Females can get Duchenne too. Carriers can be manifesting, meaning they display some symptoms of Duchenne, varying from muscle pain and fatigue to Duchenne of the same severity as seen in males. The odds of a female having Duchenne of the same severity as boys is 1 in 50 million. Extremely rare, but it does happen. 9. Those with Duchenne often have unusually large calves, this is known as pseudo-hypertrophy. It's caused by dying muscle cells being replaced by fat and scar tissue. 10. There is currently NO effective treatment, Duchenne is 100% FATAL. If you've learnt something from this post, PLEASE SHARE to help us raise awareness in the fight against Duchenne. Below is an image of the Dystrophin Gene. Charlie has a duplication of Exon 3, diagnosed aged 8!

13.01.2022 Saturday’s Ten News feature : Wheelchair Accessible Vehicle & Powered Wheelchair Thank you to Everyone involved from Everywhere around the world

12.01.2022 Wondering how you can help raise awareness of Duchenne and Becker in the month of September? Why not change your Zoom background / Screen Saver etc to the image below which may trigger a conversation about Duchenne and Becker in your upcoming meetings! We thank you in advance for helping us spread the word about Duchenne and Becker muscular Dystrophy.... #sosduchennefoundation #saveoursons #duchenne #becker #musculardystrophy #togetherwearestronger #WDAD2020

11.01.2022 Yet another fantastic wedding dress charity ball organised by the talented Lisa and Jess from Jem Wedding Planners. This year all proceeds went towards Muscular Dystrophy WA. Thank you to everyone that came out and supported this wonderful event. Unfortunately Charlie was unable to attend tonight due to a nasty fall in the shower yesterday but I can’t wait to tell him about all the gorgeous dresses tomorrow.

11.01.2022 https://www.makeawish.org.au/wishes/wish-stories/charlie

10.01.2022 It sure has been a very happy and emotional weekend. Friday afternoon we finally collected Charlie’s wheelchair accessible vehicle. To see his face was simply brilliant. Today we managed to do something simple like go to the shops and it was the best feeling. There was no stress, no sore and painful back for me having to lift his mobility scooter into and out of the car and no strange stares from the public with seeing a child in a mobility scooter. Charlie manoeuvred through... the shopping centre like a pro. We truly can not thank everyone who has supported and encouraged us through this fundraising journey. Without you all we honestly would not of been in this position. Barry and I will continue to educate, raise awareness and fundraise for other families and we have hope a cure will be found. Our entire family will also continue to volunteer our time to other causes close to our heart as we have done so even prior to Charlie’s diagnosis. We feel even though our lives are exceptionally busy we will always have time to give back. Finally a special mention to my friends that constantly urged us to start a Go-Fund-Me account and the number of businesses and celebrities who also assisted on the journey. See more

09.01.2022 Charlie would love for you to type the words ‘Cure Duchenne’ in the comment box below and help us fill this jar. Prayers are so much more powerful with Family & friends joining us. Help us share and raise awareness for Duchenne. We need to find a cure for all the boys. ... Thank you DMD is caused by a defect in one of the genes in the body. Doctors call this a mutation. The largest gene in our bodies contains the instructions for making a protein called dystrophin. Dystrophin is found in all muscles in our bodies and plays an important role in protecting our muscles while they are working. All the genes in our bodies are packaged into ‘groups’ called chromosomes. These chromosomes are inherited from our father and mother. If you are a girl, you have two X chromosomes (one X from your mother and one X from your father). If you are a boy, you have one X chromosome (from your mother) and one Y chromosome (from your father). The dystrophin gene is only located on X chromosomes. As boys only have one X chromosome, DMD is much more common amongst boys. In two thirds of cases, the faulty dystrophin gene is passed from the mother to the child. These women are called ‘carriers’ because they carry the DMD gene although they do not have DMD themselves. In one third of cases, a spontaneous mutation happens at the beginning of the pregnancy. No one is to blame for either inherited genes or spontaneous mutations. There is nothing that anyone could have done before, during or after the pregnancy to prevent a child from developing DMD. Genes are very complicated and sometimes they go wrong.

08.01.2022 Last chance everyone!!

06.01.2022 10 News at 5pm WAST Charlie’s Wheelchair Accessible Vehicle reveal Tune in if you can we will add the link & pics when available Tonight

06.01.2022 #October is round the corner and we're excited!! **To celebrate we're giving away 2 TICKETS** (incl. drink on arrival, food + donation) It's going to be a magical night at Mulberry Estate! For the chance to win SIMPLY: + '

05.01.2022 Raising Awareness for our boy Charlie Henrik Mone

05.01.2022 Words can not express the pure admiration I have for our son. Tonight he was telling me about a classmate who suffered a significant burn with boiling water. We discussed the surgeries she endured and medical procedures she went through and the pain she would of suffered. At the end of the conversation he said ‘I will never complain about my medical procedures and the pain I live with daily as her pain would of been far greater and I am lucky I only have DMD as some kids go through much worse’. I honestly can’t believe no matter what he endures he is always thinking about the positives and thinking of others.