Search

Bits & Bobs About Me My name is Justine Clark. I’m passionate about disability advocacy and making us more visible in all aspects of daily life. I was the first person to be in two pageants as a wheelchair user. I’m an actor, model, and vegan. I have a passion for the environment as well as making a world that’s equal for all as we are human beings that deserve to be treated as such. I love fitness, I'm a writer, I love interior design, and I am also a fashion collector. I’d love to have my own foundation one day that helps and enriches the lives of those who have been in foster care and that live with disabilities.

About me Hi! My name is Amanda! @amandasteijlen on Instagram! I am 27 years old and live in Tampa, Florida. I have a super sweet husband and two golden doodles. We travel the US in our RV. I share my life journey with a chronic illness and generalized anxiety disorder on Instagram and on my website www.amandasteijlen.com. I founded a nonprofit organization that supports the disabled community and am in the process of becoming a rehabilitation and mental health counselor! Diagnosis My journey all began when I was about 8 years old. My parents started to realize that my "tippy-toe princess walk" was not exactly what they thought it was. I started to lose the ability to run, climb stairs, get up off the floor, etc. After many many doctors and an incorrect diagnosis, at the age of 10, I was finally diagnosed with Limb Girdle Muscular Dystrophy Type 2A. This disorder is caused by the inability of my body to create a protein that builds muscle. It is progressive and over time causes the degradation of muscle. Chronic Illness & Mental Health Advocacy I am a spokesperson and social media advocate that brings awareness to chronic illness and mental health! I am a certified meditation instructor and am also on my way to being able to provide mental health counseling. I plan to specialize in those with chronic illnesses. Wheely Big Dreams Nonprofit Organization I founded a nonprofit organization that provides adaptive devices and support for those with physical disabilities. Over the years I have been blessed with support from my family for all the costly devices that I needed that were not covered by insurance. I am so excited to be able to change the lives of others by giving them these live changing items! Without the assistance to get a wheelchair-accessible van, power wheel, offroad wheelchair, etc. my life would not be nearly the same. Please visit our websitenbsp;to donate! You can make such a huge difference in someone's life!

Two prothesis? I can handle them! Hi, I'm Andrea and I'm a 9-year-old boy. I was born with a rare condition called Fibular Hemimelia. After many surgeries, I had two amputations and now I wear 2 prosthesis that gives me the ability to have the ability to do everything. I like sports and I practice horseback riding, it makes me feel good and free. I also got my first medal in a small competition with other kids. I have a Facebook and an Instagram page where I talk about myself and share stories and content about disability and about how life is beautiful. Instagram: @andrea_roccamo_amputeebr>Facebook: Andrea Roccamo Facebookbr> If you want to support me and help me have some sports prosthesis, here is my GoFoundMe: https://gofund.me/e10ff9b4

Let's tell you my story! Life is unpredictable. You never know what tomorrow brings, or if tomorrow will come at all. Every new day we have in this world is a blessing. Hi there, I'm Roxana from Romania. I currently live in Italy & Germany. Let Me tell you my story. Starting with the beginning I can tell you I did not have an easy life. I had a difficult childhood. Born into a poor family, my parents had a lot of problems with alcohol. To escape the unbearable situation at home, I left the house and got married very young. Before I turned 18, I had a son. But my marriage was not a happy one, and in 2009 I got a divorce and decided to look for a better life in a new country. After two weeks after my arrival in Italy, I was involved in a terrible car accident on a highway in Verona, which changed my life completely. Within seconds after the tires screeched, I lost the use of my legs and much more. I incurred a spinal cord injury at the mid-chest level. I’m back to being myself. I had come to accept the biggest challenge in my life – my disability. Throughout my life, I slipped from one nightmare to another, and I had no hope that my situation would ever improve. But my will to live prevailed in the face of my fervor to end it all. God didn’t turn away from me and he prepared me for what was to come as I still thought that I had no future to look forward to. He kept me strong through it all, and I kept writing my story, one page at a time. Later, after 7 long years of depression, I opened back up to the world. I started participating in numerous fashion shows during Milan Fashion Week and that felt empowering. I learned that a smile is much more feminine than a stiletto. I firmly believe that this modeling initiative has managed to point out that sensuality can exist even in the confinement of a metal wheelchair, and that real beauty is internal, it doesn’t go away when life traps you in special circumstances. Then, in search of a new challenge, I discovered hand-cycling. A hand-cycle is a mobility device that allows any person, disabled or able-bodied, to travel on bike paths and roads powered by his or her arms. Once I tried it, I fell in love with what it offered me – the freedom to move! Also, after I became a wheelchair user I wanted to achieve all my dreams and enjoy life. I jumped on a plane and had a three-month stay in California (alone). It was my biggest dream and, happy-go-lucky, I did it! I made tremendous friends there and I stayed in the house of a wonderful family. They helped me with accommodations and supported me throughout. I met with the Challenged Athletes Foundation (CAF), which introduced me to many new people and made my stay a fantastic time. Later, I came back to California to participate in the great cycling event "Million Dollar Challenge", biking from San Francisco to San Diego in a week. Wonderful experience!! My life's about much more than the words here for that I had chosen to put it on paper and let people get inspired, and motivated by my story. My book "Jungle of the Soul" is a valuable tool for those struggling with depressive thoughts and feeling a lack of self-worth. It provides the keys to how one can overcome depression and live a happier and more full life. — Roxana D. Jungle of the Soul — A Memoir by Roxana D.he human soul is home to an enchanted jungle. If you dare to wander inside, you'll bear witness to its wonders but if you stray too far from the path, you may fall prey to the dangers that stalk your every step. There you will find places full of magic, protected by antique machinery built from the pains and tears of humankind. By going through the pages of this book, you are discovering unparalleled beauty, but you are also plunging into the darkest corners of this young woman's story. Roxana had the courage to put her entire life on paper and give the whole world the privilege to see her soul and unveil her most intimate thoughts. She invites you to experience the trials she's been through, the fears that haunted her every waking hour, and her pain that never went away. The Jungle of the Soul is a unique story that will completely change how you perceive and appreciate your life.

My life Hi Charly and assistant dog Starla here, I’m 31 and Starla is 6, my son Alonso is 5 years old We are from Kent UK. So- chronic pain, chronic illness, and battling mental health in 2012. I had a car crash then in 2013 I had a horse-riding accident, I began experiencing extreme pain and shakes, doctors gave me meds and I thought that was it, I put my trust in the doctors. They know what they are talking about... right? 2016 I had my son and suffered my body “giving up” I had an emergency c section and then gave up again in recovery BUT I’m a fighter and survived. My son was in special care for a month no one explained anything to me only that I shouldn’t have been able to try for a natural birth. It was in 2016 I was told I had a neck fracture from back when I had my car crash which is why I suffer from Parkinson like symptoms (I shake and have tremors in my legs and arms) as it’s fused back the wrong way and there is nothing anyone can do. Along with several back breaks and permanent left side nerve damages and weakness, I can’t walk far, I use my stick and electric wheelchair. When my son was born I didn’t leave the house for over a year and suffered from psychosis, severe depression, and extreme anxiety BUT with that said I’m still here and had my little dog trained as my assistance dog to help me get out of the house and be the best mum I can for my son. And yes I’m on a hell of a lot of medication! We’ve been to hell and back and we are still here, I have my daily challenges but I won’t let what happened, define me. My son is my focus and goals- he’s the one I do this all for and with the help of Starla I know I can. It’s not what I can’t do it’s what I can do, I have a loving supportive family around me. I’m helping others with mental health, chronic pain, fellow spoonies, and raising awareness around assistance dogs in the UK. Stay strong and hang on in there - you are not alone @starla_little_legs

Our Boy Noah Rabeh was born on 5/4/20. He was born 6 weeks early two weeks into the first covid 19 lockdown. I was in hospital on my own until the last possible second until dad arrived and he was allowed into the room with me while I had my c section. Noah had many complications when born and we later have found out Noah has got many life-changing medical problems that we will have to live with and overcome and he grows and his body changes. He currently has Cerebral palsy. Due to brain damage ( was born with 2 bleeds on the brain which has made his front left lobe smaller than the rest). The Middle section of his brain ( corpus callosum) is missing. Epilepsy (Infantile Spasms), Impaired Vision which we recently had diagnosed (sees lights and blurred shapes close to him). Unsafe swallow which has resulted in him having to have his NG tube placed back. Two holes in his heart(thankfully they are closing. Noah more than likely will never walk or talk .... BUT, he is here. And he is amazing, his smiles and giggles light a room up and we wouldn't have him any other way. He has definitely completed our family and we would be lost without him Noah also spends a lot of time making tiktoks with his big brother and his Dad which are cute and adorable at the same time.

Ruby’s Journey My name is Ruby and I was 5 months pregnant with my first child when I was involved in a motor vehicle accident that left me with a spinal cord injury, level t-12 complete, which basically means paralyzed from the waist down. Never in a million years did I imagine being a wheelchair user, let alone being a first-time mom in one. It was definitely a hard road to adapt to, I battled depression for several years. Social media was not a thing when I got injured so I had to figure out a lot of things on my own. Thankfully with the help of family and God, I was able to pull through. I later had 2 more kids and got married, all while being in a wheelchair. 14 years later and here I am living my best life, with a healthy lifestyle. Now that social media is within everyone’s reach, I like to share my story to spread awareness and help at least one person going through a tough time. I’ve been in a dark place. I know what it’s like, and if I can help that one person out I feel like my goal has been completed. “The greatest good is what we do for one another.” Mother Teresa

I am a fighting girl with cerebral palsy. I have wonderful parents and I am now an older sister. I have daily therapies and took anticonvulsant medications. Hello! My name is Ana Paula and I have dyskinetic cerebral palsy. At 4 months I was detected when I could not hold my head up alone. From that moment I do all kinds of therapies to maintain the quality of life of a child without disabilities. I have difficulty swallowing, I am not walking yet but the process is slow and I know I have a long way to go. My parents did not allow themselves to be defeated and there was no time for sadness. I go to school with children my age, with and without conditions. I play ball from my wheelchair and I really like to dance. I am a happy, smiling girl.

The endless marathon Hi I am Raquel, mother to Jacqueline but everyone calls her Jackie. She will be 8 this 11/21. I had just about a normal pregnancy with almost no issues. I did have gestational diabetes but it was controlled with diet. At 36 weeks pregnant, I had to be induced for intrauterine growth restriction. My placenta was taken for further analysis to check for abnormalities but everything came back normal. Jackie seemed like a perfectly developing baby, but I remember at about a month old I would look at her and get a sense that something wasn’t right. I remember asking my mom but she thought I was just nervous. 2 months in, her first seizure arrived. The beginning of an endless marathon. First it started with a leg shaking, and a week later her whole left side. Then these shaking fits as I would call them started happening more. Developmentally she was showing signs of regression and was not meeting milestones. We started seeing a neurologist here in our county, and we felt at first like he would find the solution. But our first experience with that doctor was disastrous and he made us feel like it was our fault. He claimed that he would cure Jackie. It was a constant battle and nothing seemed to progress and she would continue to have seizures. Finally I told my husband one evening to drive to Children’s Hospital Los Angeles where we could get the answers we needed. The beginning to a path of answers. We spent almost 2 weeks there. Jackie had countless tests done and we found out the neurologist back home had diagnosed her with epilepsy. The doctors in LA were upset that we were kept in the dark. Jackie was diagnosed with infantile spasms, a rare form of epilepsy that could either be controlled with a steroid or not at all. Unfortunately she has failed just about every seizure medication out there. Jackie has undergone a lot in her short life. But after genetic testing we found out she suffers from an even rarer form of epilepsy, SCN8A epilepsy, which puts her twice at risk for SUDEP (sudden and unexpected death in epilepsy) Jackie’s conditions consist of SCN8A epilepsy, cerebral palsy, cortical visual impairment, global developmental delay, ataxia, astigmatism, dysphagia, quadriplegic, infantile spasms, and Dravet Syndrome. She’s had surgery for a vagus nerve stimulator for her seizures and a g-tube for her feeding problems. Jackie overall is a happy child. She loves being outside, and lets us know when she is happy or upset. She’s been able to enjoy life more by going to Disneyland or live sporting events. Even in her darkest hours where life throws her curveballs, she fights back and comes back with a smile. Life is short but we try to make the best out of it and cherish our time with her because we don't know if that may be our last day with her. This whole journey with Jackie has taught me what real strength and unconditional love is just by how she looks at me. I’m lucky to be her mom and I hope to see her and my youngest daughter Gianna grow up together. But if our time with her is limited, we’ve accepted it. Mommy, daddy and baby sister Gigi will cherish whatever time we did have together.

Epilepsy With Ace My Name is Ace, I was born with Septo-Optic Dysplasia which is a vision condition and a brain condition. For me, this means low vision, cognitive delays, Cerebral Palsy, and now a severe form of Epilepsy called Lennox-Gastaut syndrome. Out of everything, Epilepsy has been the hardest of them all. I can practice catching a ball, walking upstairs, and even reading. I can gain the strength and knowledge to overcome obstacles. I can't however practice not having a seizure. When my brain "reboots'' as I call it, I lose all control and sometimes my memory, leaving me exhausted and confused. I don't get to pick and choose when this happens. It really has become my biggest villain at the moment, taking every bit of independence I have worked so hard for. However, I continue to fight and make progress with the help of medication, therapy, numerous surgeries, and injections. We continue to research new methods and treatments to help me find independence from these seizures. I'm a typical middle school kid who loves playing adaptive sports like baseball, soccer, and basketball. I also love being outdoors, hunting, fishing, riding my adaptive bike, and going on adventures with my family. My mom is constantly finding new ways to adapt to my abilities and to keep me safe and included. I love going to adaptive summer camps where I can do many of my favorite things safely like zip-lining, shooting arrows, and riding horses. My content includes a lot of my adaptive adventures. As well as supplemental education, resources we have found to help me on my journey, and why it is essential to continue the research to cure epilepsy.

Yes that's me, Karen :) Yes, that's me, Karen, 23 years old. I would like to share my story with you. Basically, I had a lovely, beautiful childhood filled with joy, positivity, and happiness. One day I am told that I have leukemia, yes, don't panic, it is a blood cancer. I was 7 at the time, and I didn't really understand what was going on. Anyway, believe me, it was truly an exceptional event. During my treatment I had complications. And there, I must have discovered my new body, a month after waking up from a coma and 9 months in the hospital. A new life, a new challenge: I couldn't walk or talk anymore. My love for dancing has helped me heal and overcome all my fears. My smile is my weapon!

My Life Nikita Dulerain was born on 14th June 2004 in Vilnius, Lithuania. His life story was seemingly determined by medical diagnoses – cerebral palsy, epilepsy, minor learning disability, and autistic traits. The prognosis was very serious – doctors claimed he would be unable to walk, speak or hold a pen, leaving him unable to write, draw, or do many other basic things that most other children could. It has been a long and arduous journey for Nikita to adapt to our world. Everything that normal people do without a second thought, he had to spend long years learning. Breathing, swallowing, using cutlery, recognizing human emotions, differentiating cold from hot, and good from evil. However, God gave Nikita a surplus of patience and determination. When he was learning to walk, he fell down with every step. But every single time, he got up and kept walking. When learned to speak – he started to motivate himself – “keep trying, work harder, you can do it!” It is as if despite learning many words, Nikita forgot to learn the word “impossible”. With the support of his family and many years of rehabilitation, Nikita became able to do much more than walk and talk. He can do many things which seemed inconceivable in the beginning. There is a widespread belief that if a child with many disabilities doesn’t learn something by the age of 7, it’s strongly unlikely that they ever will. But this is not true. When Nikita was 11, he said goodbye to his wheelchair forever. When he was 12, he learned to swim. At 13, he could read (now he speaks and reads in two languages). At 17 he could finally heat up his own food and bring his plate to the dinner table. In Eastern Europe, social integration for children with special needs is very poor. An environment of accessibility is nothing but a dream in many countries. But despite this, Nikita’s family did everything possible so that he could live a normal life full of happiness and fulfillment. He rode a horse, swam with dolphins, went into crypts and underground tunnels, flew on a hot air balloon, went camping, and climbed to the peaks of mountains. He is completely devoid of fear because he knows for certain that his mum and younger brother are always there for him. In all his baby pictures, Nikita is always smiling, and it isn’t obvious from them that he is a child with special needs, standing up on his own in some photographs without any support. But always, behind the camera stands his little brother, ready to give him a hand for support at any moment. This is very important – to know there’s someone an arm’s length away who won’t let you fall. Nikita spent a long time learning to express his emotions. For many years, he would scream frequently. He desperately needed routine and rules; a clear understanding of exactly what would happen in the near future. If you jumbled up the words in his favorite story, he could cry for several days. If his hands got covered in paint or ink, he would become horrified. But through hard work and perseverance, it became possible to overcome this. When Nikita grew up, he started to wonder why his younger brother was always involved in afterschool clubs and activities, whilst he only attended medical procedures. So his mother started to look for something suitable. Something, where he could express himself, and do something on his own. This was very important, as Nikita really wanted to be independent in something. He was refused the chance to learn to swim, with the justification for the refusal being that his condition would preclude him from practicing even with the paralympic swimming team. The next option was music – Nikita turned out to have a great ear, and an amazing teacher was found who was prepared to take on a pupil with many serious disabilities. For some time, Nikita was absolutely overjoyed, but then the teacher left the country and Nikita was once again left with nothing to do. But then, it was suggested that Nikita start drawing – a teacher was found who wished to work with him. And so, a boy who had poor use of his hands received paint and a brush, and then a miracle happened – he could finally express the unique world contained within him. Within his mind, there are no limitations, and this is why he simply spills emotions onto the canvas and uses colors to intertwine fears and desires, passions and aspirations, illusion, and reality. In his paintings, everyone sees something deep contained within the soul. Someone sees a fairy, someone sees a demon, someone– a lake, someone– a blue giant. His art bears resemblance to early Mozart, in that they are both complex and simple at the same time. His paintings absorb, one wishes to see them over and over, and each time discovers something new. The catharsis of color and incredible energy leaves no one indifferent to them. After all, that which is created pure and from the heart will be received in the same heartfelt fashion by the viewer. Now Nikita is the youngest member of the Eurasian art union.The winner of international exhibitions such as the American art award in 2021.