Search

Art is Freedom with Osteogenesis Imperfecta My name is Jacob Cooper. I am 27 and live in Little Hocking, Ohio. On August 2, 1991, I was born with a rare disease called Osteogenesis Imperfecta (aka brittle bones). When I was born my parents and the doctors had no idea that I had brittle bones until I wouldn’t stop crying and one doctor noticed that my body structure was a little different and immediately thought of Osteogenesis Imperfecta. Soon after I was born they diagnosed me and told my parents that I didn’t have a very long a life spanned and to take me home and enjoy the time they had with me but due to my parents not hesitating one bit, they found the right doctors and therapists to give them the correct information on how to care for me. There doesn’t go a day where I don’t think about how brave my parents are! The diagnosis of brittle bones means that your bones are very fragile and end up breaking quite often in life. While growing up I had very many fractures and had lots of time healing. While I was healing my grandma and my dad always motivated me and taught me how to use creativity to stay positive.

Making bracelets Are important My name is Elaine! I’ve been making bracelets for a long time. I loved it so much that I started a business. The proceeds currently go to homeless kids and teenagers. I make bracelets all day long, and I'm so happy people like to wear what I create. I’m trying to make them for the Children's Hospital, Scottish Rite Hospital, and Children's Medical Center Plan. I’m proud to be happy and smile. I love making people happy and helping people have fun with courage and respect. I’m excited because I want to be In the news as my dream is to make websites for myself with bracelets. Jewelry making is just a part of me and makes me happy.

First time scuba diving with Diveheart Diveheart is a nonprofit organization that gives children, adults, and veterans with a disability the opportunity to scuba dive. The first time I ever tried scuba diving was on August 11th, 2012 when I was thirteen at Seaventures with Diveheart as part of an event for people with a disability, which was actually a bar mitzvah project fundraising event for a guy named Zack Bernstein, who was trying to buy full face masks for Diveheart and also trying to bring Diveheart to Atlanta, Georgia. He was able to raise enough money for four full face masks and also introduced a lot of people to Diveheart. I wore a full face mask which allowed me to breathe in the mask, air cylinder, and flippers. My instructors/dive buddies at Seaventures were Matt Crawford and Claude Smith. Also The 11alive news station in Atlanta, Georgia found out about the event and aired a segment about it on the 6pm news. Second time scuba diving with Diveheart The second time I scuba dived with Diveheart was three years later on March 22nd, 2015 when I was sixteen as part of a senior project at Cherokee County Aquatic Center. The gear and clothes that I wore on that day was a regular diving mask, air cylinder, my diveheart neoprene shirt, and flippers. I also learned how to breathe using a regulator that was attached to the air cylinder that I was wearing in the pool. I had Matt as one of my scuba buddies again, but I forget my other scuba buddy's name. Towards the end of the dive with Matt, I saw my now friend Heather over on the pool deck and swam over to her and asked her if she wanted to dive with us and I think she said yes so we swam for a few minutes and then we got out and I think she helped me take off my gear and put a towel over my lap which I appreciated because I was cold and then I gave all my gear to Matt who was still in the water :)

Keeping A Smile with Ehlers-Danlos Syndrome (EDS) I’m Josie and I’m a 25 year old wife and mother with Ehlers-Danlos Syndrome (EDS). EDS is a degenerative genetic condition that makes my collagen deficient. Collagen is the basic building of all of the tissues in your body so EDS impacts all of my body systems such as circulatory (heart and veins), respiratory (breathing), digestive (eating, nutritional absorption, motility, etc.), nervous (brain, nerves), ocular (eyes), musculoskeletal (muscles, bones, tendons, ligaments), integumentary (skin), immune (preventing illness and infection), endocrine (hormones), and reproductive (uterus and ovaries). EDS also causes other conditions that are called comorbidities. I have over 35 known and formally diagnosed comorbidities associated with EDS and I am still collecting more. Because EDS is rare there isn’t much that is known about it. I was diagnosed properly with EDS at the age of 16 after 7 years of searching for the cause of my medical issues and many misdiagnoses (Fibromyalgia, MS, Celiac, and more). How I Slow Ehlers-Danlos Syndrome (EDS) Progression Since my diagnosis 9 years ago my condition has progressed. EDS is a genetic condition so there is no way to cure it or to stop my body’s degeneration. However, I now have more knowledge of my conditions and how I can slow the progression to hold on to as many good days as possible. I manage my diet, exercise, medications (including cannabis #reeferforrelief), doctor’s appointments, rest, mental health, and so much more on a daily basis. It’s not always perfect, but I’m always trying. I don’t know how long I will be here or how many of my days will be good, but I’m going to make the most out of it and take a bite out of life. Always keep a smile! Please follow @seejosiesmile to learn more and follow Josie’s journey.

Little and Blessed My name is Rocio de Jesus. From the Dominican Republic. I'm 25 years old. At 2 years old I was diagnosed with a Kozlowski-type spondylometaphysial dysplasia, characterized by short trunk dwarfism. At school I used to be bullied and that caused me sadness. My condition has not prevented me from reaching my dreams. Now I am a school psychologist, I work as a counselor in a school, and tell the kids how to stop bullying. Last year I received a master in neuropsychology applied to education. When I was younger I did not like to see people with the same condition, maybe because I still had not accepted myself. God has come into my life and allowed me to love the way I am and be grateful for everything. I do not like wasting time, so a few days ago I decided to create a fan page to gather people with dwarfism in my country (@personaspequenasrd), I want to create a community so we can be an inspiration for others. Recently I created a blog to share my experiences as a little person (https://pequenaybendecida.home.blog/) I am also one of the coordinators of the adolescent ministry of my parish, I firmly believe that God has a purpose for each one of us, and when we respond to it we find true happiness.

Starting Rock Climbing as a teenager Blazesports is an organization that offers a bunch of physical activities, including rock climbing for disabled kids and paralyzed veterans to participate in. I started rock climbing with them maybe six or seven years ago when I was thirteen or fourteen years old. Blaze teamed up with a group of adaptive climbing volunteers called Catalyst Sports which is another nonprofit organization that have nine different chapters in five different states and climbing is offered in every chapter. We climbed both indoors at Stone Summit Climbing and fitness center in Atlanta, Georgia and outdoors at Cherokee Rock Village in Leesburg, Alabama. When I first started climbing, I was able to climb up the wall by myself with just someone belaying me from below like Abbey. As I got older, my leg muscles started to weaken due to not walking and going in my wheelchair full time. I went from being a solo climber to needing a side climber on the wall with me. I climbed with Blazesports and Catalyst from when I was thirteen or fourteen years old to when I was seventeen years old and during that time, I recieved the Gwinnett County Positive Athlete award in both my sophomore and junior years of high school. Getting back into rock climbing with Catalyst Sports When I ended up not rock climbing with Blaze anymore due to turning eighteen after my last climbing session with them, I wasn't too happy because I was gonna miss it. I tried other things as I got older. I turned twenty back in January and found out that Catalyst was having an adaptive climbing clinic back in April for anyone with a spinal cord injury and physical disability, so I talked to my parents and I got back on the climbing wall for the first time since I was seventeen on April 13th, 2019 and it definitely was a workout for me. I loved attending and participating in April, so I went to the June clinic. Maggie (one of my side climbers) said that my foot placement had improved from the April to June climbing clinic, which was a good thing for me because I feel like the more I do something, the better and easier it gets :)

Hearing Voices Phoenix, Arizona. The Valley of the Sun. The Sonoran Desert. Heat exhaustion. Sunburn. Dehydration. The voices in my head told me not to go to Phoenix in the summer, but I’d already booked my trip and told my friends I’d be there. I blew three tubes in my wheelchair tires 72 hours before leaving. What if I got to my layover in Denver and found another flat tire? What if I was awakened in the middle of the night, alone in my hotel room, by the sound of a tube popping? Could I find an accessible bathroom each time I’d need to eliminate all the water I’d have to drink to stay properly hydrated in the desert’s brutal summer heat? Despite the reservations I had about going through with what seemed like the dumbest thing I ever agreed to do, it was hard to imagine backing out of the plans I made. I was conflicted, and the closer I got to departing, the louder the voices screamed. Decision Time So I got out of bed in the middle of the night on a recent Tuesday, drove my car to Dulles airport, rode the shuttle from the extended parking lot to the terminal, and boarded a flight to Phoenix. A week later, I reversed the process and returned home. Not surprisingly, the dreadful scenarios I imagined prior to departure never materialized. In fact, quite the opposite happened during this vacation. Contemplating all I would have missed had I given in to doubt and fear leaves me thankful that I ignored the voices. Old Friends For starters, I am reminded that the effort required to reconnect with old friends is worth it. I was able to spend time with people I’ve known since I was a child. We share memories of growing up in the same small town in Pennsylvania where we ate in hoagie and pizza shops that are considered local institutions. We competed together on the swim team before we were old enough to drive a car. We graduated from the same high school. Our parents know each other. We tell the same stories we told a quarter century ago, and they’re just as funny now as they were back then. That’s just how it is with old friends. Mother Nature Water is often called “the great equalizer”. Although I have a spinal cord injury and am unable to walk, in the water I am weightless and free. That’s one reason I love going to the Caribbean to scuba dive. But exploring the Desert Botanical Garden and the barrier-free trails at the McDowell Sonoran Preserve (Bajada Nature Trail) and Estrella Mountain Regional Park (Gila Trail) provided a different way for me to appreciate Mother Nature. Surveying the desert, the cacti reminded me of the coral formations I see in the ocean. It came as a pleasant surprise to remember that the peace and solitude I know below the ocean’s surface exists on land as well. When my options for entertainment one morning were to peruse the Bible Museum in my hotel or meander along the Gila Trail, I chose to get out and leave only tire tracks. Nature deficit disorder is for real, people. Why be a statistic? Sedona And then there’s Sedona. We drove in from the south on route 179. The first humongous masses of red rock appeared ahead while The Moody Blues sang “Nights in White Satin” on someone’s playlist. Tears formed in my eyes. A quick stop in Sedona’s Visitor Center taught us that the Centennial Trail, on the west end of town, is paved and navigable in a wheelchair. We went straight to it. I needed help to propel my chair along portions of the trail, but we were surrounded by awe-inspiring natural beauty. Clear blue sky with an occasional puffy white cloud. Jagged peaks and table-flat mountaintops off in the distance. Colorful rocks ranging from red to tan to light grey. Some covered with spots of green vegetation. Others totally barren. Each one its own unique version of perfection. Lessons Learned I now understand why Sedona is considered one of the most beautiful places on earth. And I also get why Lyle Lovett said, “You don't have to have anything in common with people you've known since you were five. With old friends, you've got your whole life in common”.

My Amputee Story The picture of me here was taken immediately after I had my first fall as an amputee. It took me a few minutes to get to the point of smiling, but I got there! I had anticipated this fall for some time and perhaps that is why I felt it was so poignant of a moment. What I had not anticipated was the morning I went out for a run only to get hit by a garbage truck. I was medevaced to a neighboring island where I underwent eight surgeries, including the amputation of my right leg below the knee. I spent almost two months in the hospital and it was more than three months before I was given the opportunity to stand up on my left foot. While I was in the hospital my brother approached me with the idea to set a monumental physical goal for myself. The intention was to motivate me to continue on my path toward healing, ultimately embracing the physicality that would be my new body. He suggested Kilimanjaro and I said, "Let's hashtag that #kili2020!" Our goal is to climb Kilimanjaro one year after the date of the accident. As I heal and get stronger, every step is a challenge. I am constantly in awe of what and how much our bodies do for us. I have not yet learned to walk on two feet, but I know that eventually, I will get there. And I'll do it smiling. I've been given a gift to experience the world and this life anew with an appreciation for all that hurts and gives us joy. I awoke the morning after my first fall and my whole body was in pain. The hurt was everywhere, staring me in the face. But if the process of living isn't magic, I don't know what is. I randomly picked up one of the current books I was reading and turned to where I had last left off. From Oprah Winfrey's book, 'The Path Made Clear': "I had always thought a mountain is a magnificent metaphor for life. From a distance, the ascent looks clear and smooth, but once you actually set out for the summit, you discover unexpected valleys and precarious ridges along the way. If your internal compass isn't set to keep climbing, every stumble will give you an excuse to turn back." My prayer for anyone who finds themselves challenged in life is that you too find that climber within you who takes the time to allow your own speed, enjoy the view, envision a way forward and through. Your Kilimanjaro awaits.

A Song Called "Better on Drugs" Mental Health Awareness is Important. For Me, Cerebral Palsy came with a lot of obstacles - mobility, making friends, being accepted, fitting in, etc. - and it felt as if these obstacles were constantly pushing me to the brink of depression. The more I sought help, the more it seemed that medical institutions, instead of helping me conquer my issues, were more fixated on prescribing pills and making me believe they're "Better on Drugs"...

Creating a barrier-free world as Africa's 1st wheelchair runway model I am the Vice Miss Wheelchair World 2017 and the first woman in Africa to be a runway model in a wheelchair. My main goal is to break the stereotypes associated with people with disabilities in the fashion/ entertainment industry and to pave the way for those to follow and succeed me. The purpose of my work in the community is to instill a culture where everyone feels included and catered for. I want to make the presence of disability more mainstream and accepted in society and to help in creating a barrier-free world where everyone can access.

We need your help to create the ProPulse After 6 months of persistence and hard work, we have developed a fully functional prototype device that makes ANY manual wheelchair fully electric. We call it the ProPulse. Today marks one of our most important milestones to date, the start of our GoFundMe campaign. Our team is creating an alternative to electric wheelchairs that saves the user and their families tens of thousands of dollars. Our Story The high cost and long wait for electric wheelchairs have caused a serious need for this device. We are tired of seeing the wheelchair community being put second! Our goal is to introduce the ProPulse by March 2020, but we can’t do it without your help. Product testing is extremely costly especially for a team of recent graduates. However, since the first day we started this project, the community support has been immense. The love and encouragement we have received is the fuel to our fire. We need your help to provide mobility independence to the disabled community! Get to know the team, the users, and the impact checking out our GoFundMe campaign with the link below. 💙 Support the Team: Go-Fund-Me https://www.gofundme.com/f/help-us-create-an-affordable-electric-wheelchair Instagram: @citryneofficial Facebook: ww.facebook.com/CitryneOfficial Product Video: https://youtu.be/TkMTEo-_WBM Product Features · Low Cost · 360-Degree Turning · Off-Road Capable · Extremely Light and Portable · Backup Sensor · Multi-Day Battery Life · Quick and Simple Mounting · Able to Drive on Inclines · Water Resistant · Braking · Controlled by Joystick · Phone Charging

Not Really That Different At 9 months old my family’s life along with mine was forever changed. I was diagnosed with a neuromuscular disease called Spinal Muscular Atrophy and only given 2 years to live. 18 years later and I’m living a life any able-bodied person can live. I’ve done cheerleading, ASB, Girl Scouts and a few other clubs. You name it I was doing it or at least planning on it. I just finished my first year of college and am going to school for a degree in Psychology. I’ve always had people question my capability of accomplishing things and look down on me as if I was over my head with my dreams. Even though I have days where life can be a little tiring I always remember I have kids with disabilities looking up to me, wanting to be me. My whole goal is to live my best life while also showing others that a chair doesn’t stop you from doing so, it just makes you think outside the box in certain situations.