They say you would walk on fire for your child... so

A team of brave sole’s from Ikonic, from across departments, will be testing their courage, ability to overcome fear and their feet in Ikonic’s most extreme challenge for Duchenne UK yet.🔥𝐀 𝐅𝐢𝐫𝐞𝐰𝐚𝐥𝐤🔥Our team will be walking across 15ft of coal burning at a cozy 500 degrees C.𝐖𝐡𝐲 𝐚𝐫𝐞 𝐰𝐞 𝐮𝐧𝐝𝐞𝐫𝐭𝐚𝐤𝐢𝐧𝐠 𝐬𝐮𝐜𝐡 𝐦𝐚𝐝𝐧𝐞𝐬𝐬⁉️ For Duchenne UK, my son. Joey Levene, has been living with Duchenne, and together with many others we have been supporting the charity in many projects to help find a viable treatment

I can't believe Joey is now blessed to have reached the age of 17. It's been almost 16 years since Joey was diagnosed with Duchenne Muscular dystrophy. During covid, I really feel everyone could relate to our worse fear about your child or loved one getting sick and dying of a disease. Duchenne is a progressive muscle wasting illness.I never in my wildest dreams, thought Joey would still be walking at 17, though assisted at times with his wheelchair. The doctors tell us he is one of the “lucky ones” as the condition hasn’t robbed him of his all his abilities yet… time though isn’t our friend, 𝐃𝐮𝐜𝐡𝐞𝐧𝐧𝐞 𝐢𝐬 100% 𝐟𝐚𝐭𝐚𝐥

I feel blessed every day for this and that he is still with us. Joey is full of life and brings so much joy into our lives. Not many see his struggles, but we’re so proud of the way he deals with everything. I know what the future according to current medical science will bring. An empty chair at our table. But we are getting closer to a treatment, a chance of a longer and better quality of life for this and the next generation of those with Duchenne. 💷𝒀𝒐𝒖𝒓 𝒉𝒆𝒍𝒑 𝒘𝒊𝒍𝒍 𝒉𝒆𝒍𝒑 𝒕𝒐 𝒂𝒄𝒉𝒊𝒆𝒗𝒆 𝒕𝒉𝒊𝒔 𝒂𝒏𝒅 𝒈𝒊𝒗𝒆 𝒉𝒐𝒑𝒆 𝒘𝒉𝒊𝒄𝒉 𝒊𝒔 𝒂 𝒈𝒓𝒆𝒂𝒕 𝒈𝒊𝒇𝒕! 𝑷𝒍𝒆𝒂𝒔𝒆 𝒅𝒐𝒏𝒂𝒕𝒆 𝒕𝒐 𝒐𝒏𝒆 𝒐𝒇 𝒕𝒆𝒂𝒎 𝑰𝒌𝒐𝒏𝒊𝒄 𝒕𝒐𝒅𝒂𝒚

.💷If you want to know what life is like living with Duchenne then read this post from a fellow parent in the Duchenne community. 𝐈𝐦𝐚𝐠𝐢𝐧𝐞

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 being sat in a chair, while you watch other people walk around......

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 going to the beach, being stuck on the sea wall, unless they have specialist wheelchair access, watching everyone else having fun on the sand and in the sea, and you can't do this because you're stuck in a chair...........

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 seeing all the fair ground rides, and people screaming and having fun, and you can't do this because you're stuck in a chair or don’t reach the height requirements and your younger sibling does

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 people walking round eating ice cream without a care in the world, while you can't hold an ice cream, because your arms no longer work or your fingers can’t grip.....

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 having an itch that needs scratching, but you can't unless you ask someone to do it for you.........

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 going out for dinner and knowing everyone is watching as you're struggling to feed yourself but that last bit of independence you have left leads you to get that food to your mouth in the weirdest way, but its achievable for now, but not much longer, and you know it won’t be long before you have to be fed in public, then people really will stare..........

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 watching others giving each other a hug, knowing you can't do that anymore...........

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 seeing dogs on the street, who are loveable and all you want to do is stroke them, because this is your passion, but the dog is scared of your chair, and too big to be lifted to you, so you have to watch while others get to stroke it, while you desperately want to ..............

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 having to be washed, and dressed while you just lay there wishing you could do all this yourself at your age.......

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 someone else cleaning your teeth for you , sometimes catching your gums and hurting, while you wish you could just do it............

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 having to have help when you need the toilet, all the while wishing you had your own privacy to be able to do this yourself..........

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 going to bed at night, asking someone to get your legs this way, your arms that way, while wishing they would just move for you ...........

𝐈𝐦𝐚𝐠𝐢𝐧𝐞 at 12 years old, you still have to have a baby monitor and call out through the night for your body that will no longer work to be put into another position, when all you want is to not have to call for help and do it yourself.......These are just a few examples of what will run through a child’s head with Duchenne .............Just take one day, and put yourself in this position, you wouldn’t want to would you..........So why should our loved ones have to..............


💷𝐈𝐟 𝐭𝐡𝐢𝐬 𝐮𝐩𝐬𝐞𝐭𝐬 𝐲𝐨𝐮, 𝐢𝐦𝐚𝐠𝐢𝐧𝐞 𝐡𝐨𝐰 𝐭𝐡𝐞𝐲 𝐟𝐞𝐞𝐥 𝐞𝐯𝐞𝐫𝐲 𝐝𝐚𝐲! 𝐍𝐞𝐱𝐭 𝐭𝐢𝐦𝐞 𝐲𝐨𝐮'𝐫𝐞 𝐝𝐨𝐢𝐧𝐠 𝐨𝐧𝐞 𝐨𝐟 𝐭𝐡𝐞𝐬𝐞 𝐭𝐡𝐢𝐧𝐠𝐬, 𝐢𝐦𝐚𝐠𝐢𝐧𝐞 𝐢𝐟 𝐲𝐨𝐮 𝐜𝐨𝐮𝐥𝐝𝐧'𝐭 𝐝𝐨 𝐢𝐭. 𝐏𝐥𝐞𝐚𝐬𝐞 𝐬𝐩𝐨𝐧𝐬𝐨𝐫 𝐚 𝐦𝐞𝐦𝐛𝐞𝐫 𝐨𝐟 𝐭𝐞𝐚𝐦 𝐈𝐤𝐨𝐧𝐢𝐜 𝐭𝐨𝐝𝐚𝐲.💷𝐃𝐮𝐜𝐡𝐞𝐧𝐧𝐞 𝐔𝐊

Duchenne UK is a highly focused, ambitious and lean charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy (DMD). DMD is a devastating muscle wasting disease and is the most common genetic killer of children worldwide. There is no treatment or cure. Children will be totally paralysed by their teens and won’t live beyond their 20s. Affecting approximately 2,500 people living in the UK, DMD is classified as a rare disease. It is the most common and severe form of muscular dystrophy, which mainly affects males, and can affect any ethnicity.We support Duchenne UK’s mission to end Duchenne, and with your help we aim to raise a significant sum of money that can be used by Duchenne UK to connect the best researchers with industry, the NHS, and families.💷𝑷𝒍𝒆𝒂𝒔𝒆 𝒉𝒆𝒍𝒑 𝒔𝒖𝒑𝒑𝒐𝒓𝒕 𝑫𝒖𝒄𝒉𝒆𝒏𝒏𝒆 𝑼𝑲 𝒂𝒏𝒅 𝒅𝒐𝒏𝒂𝒕𝒆 𝒕𝒐 𝒕𝒆𝒂𝒎 𝑰𝒌𝒐𝒏𝒊𝒄 𝒕𝒐𝒅𝒂𝒚. 𝒀𝒐𝒖𝒓 𝒎𝒐𝒏𝒆𝒚 𝒘𝒊𝒍𝒍 𝒎𝒂𝒌𝒆 𝒂 𝒉𝒖𝒈𝒆 𝒅𝒊𝒇𝒇𝒆𝒓𝒆𝒏𝒄𝒆!💷