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I am not Moebius I remember that day, a defining day, a lasting moment that began from my walk to the Nelson Fitness Center. I remember working every fiber of muscle, curling 40 pounds up and down and up and down. I remember struggling to pull my entire body, but my chin had to go above the bar, 5, then 10, then 20, then 40. I have never felt better. My experiments were going well, my relationships were strong, and my mind was in a place of serenity. I felt refreshed and overcome with confidence. I walked tall and every step I took that day from Nelson was with intention, determination, and purpose. Little did I know what was yet to come. As I continued to walk home feeling the best I have felt, I reached the corner of my house on East Street. “I made it!” Then suddenly it happened, I took one large step forward, then heard a “crack!” My prosthetic broke. The momentum of my body immediately sent forward, my head driving into the concrete. Instinctively, I put my elbows out and along with my knees managed to break my fall. “This... this is impossible.”I felt that the world was at a standstill for a moment, as I lay face down, gazing at my broken glasses, on the dark sidewalk. My prosthetic shattered completely. You see, this sound, this “crack!” was not unfamiliar to me. I have had heard it many times during my life, but never during a day like this. I was down yet again but I had to get up. I brought my knees to my elbows and balanced all my weight on the right side of my body, as my left prosthetic dragged along. I remember each step I had to take that day. I took 1 step, then 5 steps, then I paused to check on my left prosthetic. Then 10 steps, then 20 steps, then 50 steps. I reached my house. I was born with a rare neurological disorder called Moebius syndrome and though I have this syndrome, I am not Moebius. I am limitless. What's your excuse?

I love my sport and I invented a foot for water sports, I wish I could patent it Surfing the Padang Padang is like surfing no other wave. Sure, it's one of the best lefts on the planet, an epic wave that can be barrel heaven when conditions align. It's tucked into a peninsula below dramatic cliffs and the barrel intensity increases as water withdraws off the shallow reef. For some, it's perfection. For others, it can be just that coupled with a kiss from rocky depths. Now, imagine surfing that with one leg. My name is Fabrizio Passetti and I am an Italian surfer who grew up on the picturesque coastline of the football boot. Tragically, I lost my leg during a bike accident at just 17-years-old – I am 36 now. To tell my story I have to start at the age of 13 when I moved to a seaside village on the most beautiful surf spot in Italy. At the time I was playing football, and I had reached a rather high level, I was very interested in doing it. I was 17. I was working as a cook assistant to become a chef, and I was competing in the surf, but one night, unfortunately, fate and fatigue were my enemies, I fell off my bike and that night my life changed forever. Old Fabrizio died and the new Fabrizio was born. A new difficult path was in store for me. My thoughts after they amputated me? It was 'how am I going to surf?' I stayed for months and months looking at a white ceiling, and the more I thought about it, the more I was convinced that no one would stop me from getting back in the water. Shortly after, I started to live a semi-normal life, I worked as a chef in various countries and then in Italy. But it was all nothing, I had continuous problems with leg infections, the prostheses were too heavy for my amputation. I have one of the ugliest amputations for those who have a prosthesis below the knee because it is difficult to restore, as well as having little movement of the knee and even less leverage when I put on the prosthesis. Shortly after I opened a restaurant in Italy, I wanted to make sense of my life, and in 2008 my son was born. My reality was made up of exhausting work for one with my problem, I carried out research after research to find the right prosthesis, plus every year I invested my money to buy so many legs, I wanted to get back in the water and I was obsessed with that thought. All these sacrifices, however, went up in smoke and I saw no results, because those legs were not made to get in the water. I lost all hope and without surfing my life was lost, the only thing that kept me alive was the love of my son. Coming back to Padang, I first surfed Padang four-years-ago, but due to incompetent people, they made me a wrong prosthesis and I was forced to sell the restaurant. One evening I got out of work and felt sick, went to the hospital, and was told that I had a bone infection. Because of this infection, I had to stay in the hospital for many months and risked being amputated all the way to my groin. I cannot describe or try to make you imagine how that would have changed my life. But it was also my true leap. Leaving the hospital I bought a wetsuit and went back to training in the winter, sea swimming and continuing the antibiotics, the infection was eradicated, it was a miracle. I healed from a physical point of view but then I was part of the constant problem that no company wanted to take the risk of getting me a new leg. I could not invent anything because you have to understand that I have no insurance and with a pension that gives me just 200 euros a month. I went to the hospital to ask to amputate my knee so that I could resume work and take care of my son. But the answer was negative. They could not take the moral responsibility of amputating more of my leg. But what could I do? Without work, without a prosthesis, without my surf. In desperation, I began to repair old pieces of the prosthesis and built a reserve leg. I booked a plane ticket and left for Bali! If I had to lose my knee to get back to work at least I would have lost it surfing. The first place I tried surfing was Padang Padang, tying the prosthesis to my leg with an adhesive tape. I made my first wipeout and my leg flew off. I didn't give up and every day, I continued adjusting it until I managed to stand up and to cut the wall of the wave. After two months now the prosthesis made with components, not made for the sea, was usable for surfing. After a couple of months, I met a Kuta child who was about to lose a leg due to an accident and I did some crowdfunding. I took care of him by helping him with the little money I had left and I paid his medical bills, it was the best thing I had done in my life! Now that child not only has both legs but is also surfing. Someone on social media saw the story and there was a media boom. And it was right there that I started bringing adaptive surfing to Italy, the following year there were the first adaptive championships in California where I participated. It's only the beginning. So what's next? I need funds and supporters. To have investors who can allow me to study and perfect my foot. In addition to Itop, which supports me, I am continuing my research which, thanks to these months in Indonesia, led me to want to correct some things for stability and flexibility. My goal? I want to be able to do the maneuvers I did before my accident, maybe do amazing airs.. why not? I'm a surfer like the others, I don't want to be limited because of my disability. I am an athlete first of all. And I want to be able to finish my foot. And I want to build feet for people like me. It's funny, went to Padang four-years-ago, lost my leg and the other day, after four years, I was in Padang inside my first tube. Life is amazing sometimes.

Positive thoughts Hi, I’m Jasmine and I am 26 years old from the UK. I suffer from a condition called Spinal Muscular Atrophy which is a muscle-wasting condition that'll get worse over time. I thrive from supporting people and I can sometimes use my own experiences to do this. I drive a wheelchair adapted vehicle, which has been a life savior with my job! I live with my fiance and our cat and our life is great! My disability hasn't stopped me doing a single thing & I believe if you want to do something, get up and do it. I haven't got time to feel sorry for myself, or to ask questions like "why me". I'm a very positive empowering person. Please message me if I can help you in any way at all, or if you'd like to chat. @jasminerankin

The diagnosis "Do not try to find the proper shoes, he will stop walking anyway", this was what I heard after my 2-year-old, Andrey was diagnosed with spinal muscular atrophy, a progressive muscle loss disease. The doctor was not able to give us any kind of advice, he just told us to accept that he will be the wheelchair user. And in a month after this, the first and the only drug to stop the progression was registered in the US. In eight more months, it was registered in the EU, however, it was not available where we lived. All this time we worked very hard, to keep all the abilities Andrey had! Our little 3-year-old boy had physiotherapy sessions 5 times a week, massage sessions 3 times a week, and aqua therapy 4 times a week. We really gave it our all. The relocation It took me 2 weeks to pack our entire lives and to relocate to another country, where Andrey could start his treatment. Andrey was 3 at the time. It was not easy at all since we had another school-aged child, whom I had to move to another country, to another school in the middle of the school year. But is anything impossible, if you want to treat your child? Still has to work hard Even after starting the treatment with spinraza, Andrey still has to work hard. This little 5-year-old warrior has his physiotherapy 3 times a week, plays tennis 2 times a week, has swimming lessons 2 times a week, box training - once a week, and horse riding lessons 2 times a week. Andrey's moto at 5 years of age is #trainanddonotgiveup. Do not ask me, when I have time to take him everywhere, as his older brother also has his own schedule :) But it is all manageable, as yoocandoanything! And look at him, dear doctor, who said I do not need to bother about the shoes, do you still think he will not need them?!

Corona.... Hi, my name is Moa and I am from Sweden. Here in Sweden, everything is practically the same since the coronavirus pandemic started. Most of us go to work and school. The people that can, work from home, the rest go to work as usual. I'm glad that most of my daily life and routine stayed the same because I don't like changes so much. I like it best when everything is the same. I moved home to my mum's place for a few weeks to be with my family. However, on Sunday I will move back home to my place. I like it there a lot, with my friends. The only thing is that I didn't get to meet the jury from Swedish idol this year. Too bad. But last year I was there and did my best👍 I really enjoyed auditioning. I hope all this mess will be over soon and we will be able to enjoy life fully again.

Not A Common Condition Meet Kara. She is 3.5 years old, loves Toy Story & has the most beautiful blue eyes you've ever seen. She also has apraxia of speech alongside Down syndrome. Apraxia of speech is a motor planning disorder where the brain & mouth have trouble communicating. Kara knows what she wants to say, but her mouth can't remember how to produce the necessary sounds. This is not a common condition, though it is more prevalent in those with genetic disorders. Hard to Diagnose I say that Kara has apraxia of speech, but the truth is, she has suspected apraxia of speech. It is very difficult to obtain an official diagnosis at a young age because of a lack of words. However, there isn't a doctor or therapist on her team that disagrees. Signs and Symptoms We've noticed many signs & symptoms of apraxia of speech with Kara. For example: -She has trouble stringing sounds together. She can say "mm" & "oo", but she can't say "moo". She can say "puh" & "ah", but she can't say "pop". -She has shown regression. At one year old, she saying "dada" very clearly until she suddenly couldn't anymore. This word didn't come back until recently. -It is hard for her to change pitch in her voice. Her sounds are usually very monotone. -Another sign is that she has trouble stopping once she gets going. So instead of saying "mama", a lot of times she'll call me "mamamama". -Lastly, she has trouble synchronizing her breath to develop louder noises. Most of the time, she says things at almost a whisper. Practice Makes Perfect I have learned that the biggest part of overcoming apraxia is REPETITION. We have to teach her brain & oral muscles to work together so we practice the same words, phrases & sounds repeatedly throughout each day until they are mastered. She works very hard to reach her milestones & it is very inspiring! In addition, we are eternally thankful for her therapists. A great SLP (speech-language pathologist) will provide the best possible treatment for that child no matter the diagnosis. Kara gets exactly what she needs even though she doesn't have an official apraxia diagnosis. Not to be Feared Hearing that your child is struggling with apraxia of speech is scary. It was hard to locate resources or other families that would understand our situation. It turns out, that although apraxia of speech is a condition that should be taken seriously, it is rather misunderstood. Kara does a great job of communicating. The key was giving her multiple avenues to communicate through like sign language, visual cues, pictures, etc. With lots of hard work & support, I have every confidence that she'll be carrying around a hefty vocabulary someday. In the meantime, we will rejoice in every little achievement!

Supergirl Mia Hi, I'm Mia. I was born on May 13th, 2019, in Nuremberg. I'm actually a normal girl... but I got the special equipment from God. Instead of the usual 46 chromosomes, I have 47, I have Trisomy 21, which means I have a much bigger heart, an extra load of sweetness and a big fighting spirit. My parents found out in the 21 SSW that I am something special, unfortunately also with several serious heart defects. But they decided to keep me & love me since the first second, as I am. My start was not easy, I had to fight for my life in the first 3 months. I got a lung banding during this time because my heart did not pump the blood into my body but almost only into my lungs. After I mastered this well, I got a tracheotomy because I almost suffocated & a PEG because I didn't gain weight because of my heart. On 27.08.2019 I was finally allowed to go home with Mama & Papa + nursing service. Of course, I have a lot of equipment at home (respirator, aspirator, food pump, etc.). Since I am at home I have been developing myself super. Everyone is so happy with me & mum always says I am an absolute fighter & sunshine. I make my parents' lives so much more colorful & better. Everybody who gets to know me is immediately hooked on me, I wrap them all around my little finger very quickly. Currently, I am waiting for a surgery appointment for my heart. Oh yes, my heart is even repairing itself partially. No doctor believed in that anymore, but I'm different from the others... like the Terminator. Still, there's a lot to be fixed. In the course of this year & next year, I will get rid of my PEG & the tracheostomy will come out too. We are really looking forward to it. I hope I could give you a little insight & we would be happy if you follow us on Instagram. The page is managed by my mom :) Love, Mia with mom & dad

My College Adventures Even though COVID-19 is overwhelmingly present in all of our lives I decided to give you guys an update on something very good that's progressing in my life. I started studying and I am enjoying college life. I am experiencing a lot of adventures and wanted to share my college story. I am currently in my second semester at the University of Akron. I am studying Child Development. I love college so far. I am having a lot of fun and learning a lot, as well. I didn't even know how much I needed this experience, but here we are! I manage my own personal care aides. I'm in a sorority called Delta Gamma. Also, I joined the school disability club and was voted VP, how exciting! There is one more change, I'm retired from swimming. It was an important and beautiful part of my life, but it was time for a change. I am focusing on my studies and fun and will take up be activities in time. Right now I am just enjoying my college adventure!

Some Good News (John Krasinski) (The Office) Welcome back to the continuing story of YouTubers and Down syndrome advocates, Elijah and Crumpet! And boy, do we have Some Good News for you from Australia ... We hope you are well and coping ok with the lockdowns and changes in your part of the world. These really are strange times, with so much bad news in the media ... so to combat this, John Krasinski (who you may know from the American version of The Office) decided to make his own show on YouTube called Some Good News, during which he has fun, does good and shares good news from around the world. It's great! He showed some people who were copying him and joked about copyright, but then added that he welcomed and encouraged others to make their own good news. On hearing that, Elijah and Crumpet jumped at the opportunity to make our own Some Good News Australia show. THEY LOVED IT! John's SGN team loved our video, tweeting "We're excited to share the most adorable copyright infringement we've ever seen" (see image below). What's more, they added us to their playlist! You can find our video in the link, but we recommend you check out the original SGN channel first (just search for YouTube Some Good News) so you can see what we copied. It's worth subscribing (to both of us!) :) With that, we have become their newest SGN Global Correspondents (#SGNCorrespondents) which is a great chance for us to advocate for Down syndrome. John has over 1.5 million subscribers on YouTube (just a few more than we do!), with over 10 million views per show, so it's a fantastic opportunity for us to show how capable people living with Down syndrome can be if we believe in them, support them and set high expectations. Please come on over and support us - share with friends or get in touch via: Instagram @ElijahandCrumpet Twitter @ElijahCrumpet Facebook @ElijahandCrumpetbooks YouTube channel Elijah and Crumpet or email ElijahandCrumpet@bigpond.com You never know, we may be able to have a short video of YOUR good news on OUR good news to then get on the ORIGINAL Some Good News show! We love to hear from families with Down syndrome connections from around the world! Stay safe, Elijah and Crumpet (Dad) (Rob) ps Before we go, can we just say "Hi Mum" and also plug our upcoming kids' book, Motivate Man, which was recently funded via Kickstarter. We'll add a picture below!

Know who you are For years society has pushed me and the rest of the disabled, almost to the point of giving up. Now, with the new self-isolation and quarantine rules, some of you out there might think that this might be too much for who’s not able-bodied. I’m happy to say, you’re wrong. I’m here to tell you a secret – you possess the combination of your life’s freedom. People ask me questions such as: Is loneliness difficult for you? Yes. Do loneliness and self-isolation affect you? Yes. Through no fault of my own, I’m unable to have any “over the office cubicle” relationships. For those who are new to this new age of isolation, I know that you might be feeling angry and dark. That’s okay, just don’t forget to be positive and remember to shave. There are negative effects, yes, but for every negative, lonely affect there are always more positive life enhancements. Will there be pain and hardship? You’re darn right. How you choose to handle it, is not up to your phone, fashion trend or the latest viral video on Instagram. It’s up to you! As I sit here writing this article with one finger, I’m alone. My body aches, I’m hungry, have a headache and could go to the washroom. Being alone, I must wait for several hours, for help to arrive. I could sit here and complain, but who would listen. The last thing I want to do is annoy my service dog. (she holds all the power while tugging on my coat sleeve) I could stop writing and feel sorry for myself. This will not do anything except let the pain and agony take over me. Instead, by embracing all of my daily discomforts, this will create a stronger, brighter, and possibility-filled future. So, get up, scratch something and give back to your life. If you’re wondering how you can help me, don’t. Help yourself. Go have a shower, because we don’t want the new normal, to smell like two skunks in heat. This lights my soul and shows me that I, along with the rest of the people in the world, have the ability to overcome anything that is put in our life’s path. Life is here. We own it. The sooner we understand, respect and embrace it, the sooner society will once again make sense. For the majority of my life, I have sat and will continue to do so. It is said that sitting, is the new smoking. How do I ensure that I don’t get sick? By keeping my mind and soul, free and full of unlocked potential. Right now, the majority of us are in self-isolation. Do not let this become a deterrent to you or to those around you. Rather, this is like a self re-awakening.

This is my story My name is Abby Mccage and this is my story of coming to the realization that living with muscular dystrophy wasn’t actually my disability, but instead, It was the mindset I was stuck in and the inability to have faith that I was made with a purpose even if I wasn’t normal or what the world would classify as worthy or good enough. An uneasy feeling From a very young age, I have struggled with anxiety. There’s no worse feeling than that of feeling stuck in a place where you feel like you can’t breathe or when you feel as though you are drowning but instead of water, it’s thoughts. Thoughts of unworthiness. Thoughts of feeling as though you’ll never measure up. Thoughts of having no purpose. Thoughts of constantly caring what people think of you. Living with a disability began to take more and more of a toll on my mental health than it ever did my physical. I realized that in my life I need to focus on myself and love myself. I need to accept things and learn how to care for me, to be a warrior for myself. I want to share my story for everyone out there crippled by anxiety, you are not alone.

Diagnosed with FSHD a long time ago Well, when I was a child I was able to walk till I was 7 years old. My muscular dystrophy is very extreme. However, I was also able to skate on ice. I stood on skis while I tried to ski, don’t ask me how, because I fell on the ground very often while I was trying to cycle on my bike, but also I skateboarded on my knees and used my feet to move forward. I was able to visit my grandparents nearby and leave the wheelchair behind, in the garage. My powerchair was and is still my freedom, it is my legs. In 2014 I started to exercise in the gym under the supervision of my physical therapist. The goal is to slow down the process of becoming weaker, to stay in movement. In the present now I am not able anymore to lift my right arm which was the strongest one, I need to do concessions and ask for more and more help. It’s hard, but you need to look forward and accept the situation. I think I never thought about how to give it space. I asked my dearest friend and caretaker how to do all this, she said to me you are doing it well and accept it somehow. For several years I do mindfulness, to avoid pain and struggles. I do not use any pain medication; only medical cannabis and I live a healthy lifestyle with nice food and feel so much better. There are bad and good days and the good days are always winning, also when I am suffering pain strokes every day.