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Reflecting on my legs three years later For the past few weeks, I‘be been working on a painting reflecting the last three years. This was an emotional, yet empowering piece to conceptualize and bring to life. I think back to my medical journey, as it was a dark time for me the first two years. Most appointments I would leave crying, feeling down and hopeless. When I learned about all of the surgeries I was facing, I felt defeated. I became angry at myself, frustrated with providers, and my guard was up. I lost confidence in myself, and I stopped believing in myself. I had a difficult time putting into words all the emotions I have been feeling for the past three years. For me, the best way to express my feelings, is through expressive arts. 5 surgeries later, and my lower extremities are looking good. The pins will be removed in less than 2 weeks, and I will begin relearning how to walk, using specialized braces and forearm crutches. Out of state specialists joined my medical team, as we finally have the final piece of the puzzle; I was born with Spina Bifida Occulta, and Tethered Cord Syndrome (TCS). Spina Bifida Occulta is a spinal cord disease. It affects the spine, as it doesn't form properly when the baby is developing in the mothers womb. Usually vertebrae and/or bones of the spine are unable to close completely. TCS is when the tissue of the spinal cord is tethered to the tail bone. This is a condition that is closely associated with Spina Bifida, and most of the time, TCS doesn’t show up on imaging. When I think of TCS, I visualize my spinal cord as a rope, tied to my tail bone, and slowly it’s freying. When i move my back or legs, I feel the rope pulling harder, making my legs extremely spastic. I painted the rope wrapping around my legs to symbolize my spinal cord controlling the spasticity in my legs. I was referred to a neurosurgeon, who specializes in EDS and Tethered Cord Syndrome; usually EDS is correlated to TCS. At my first appointment, I learned the terms spasticity paralysis. Spasticity paralysis is when specific muscles are continuously over-contracting. Spasticity is caused by damage to the brain or spinal cord. The continuous contractions I experience are involuntary, meaning I can’t control when these occur. We have finally found the root cause, and there is a sense of closure. The puzzle has been glued back together. The next steps will be challenging, and I'm ready to fight as hard as I can.

Growing up with a chronic illness At the age of 11, I was diagnosed with a neuromuscular disease, affecting the sympathetic and autonomic nervous systems. I never allowed this condition to stop me from doing what I loved. I was a competitive dancer, and a cheerleader both in high school and college. I graduated Lesley University with a Bachelor’s of Science in 2013. I majored in counseling, with a minor in art therapy. I had passions for the arts, and helping others. My previous work experience focused on mental health, with a specialty working in crisis situations. In 2012, I became a board member for a support group, tailored towards adolescents and young adults living with a chronic illness. In 2013, I began graduate school to obtain my Masters in Social Work. I can't help my legs have a mind of their own For many years, I struggled with severe muscle spasms, and it was unclear why this was occurring. September 2015, I lost control of my car, due to severe muscle contractions in my ankles/feet/toes. Paramedics had to pull me out of my car; my legs couldn’t move. I lost the ability to walk due to the uncontrollable and unexpected muscle contractions. I became wheelchair bound, and there were doubts from providers if I would be able to walk again. I was hospitalized for three months. while the doctors were stumped and unsure what to do. I was labeled as a drug seeker. I had to take a leave of absence from graduate school, with a year left until I graduated. My toes were curled and contracted under my feet, and my ankles were locked. Think of the idea of walking on your toes. When you walk in that position for so long, you’re going to get a really intense Charlie horse in the back of your ankles and in the arches of your feet. Eventually, the Charlie horse goes away, and your legs will relax from walking on your toes; my legs never relaxed. I was bounced from doctor to doctor, all accusing me of faking my symptoms. The pain I experienced is absolutely excruciating, but I refused to give up my goal on learning to walk again. I started with short distances, practicing several times a day with a walker. Eventually, I advanced using forearm crutches. I would continue to push myself, until the pain was unbearable, causing me to vomit. I didn’t care about the pain; I was going to walk. My toes were still curled, and my legs were still contracted. Eventually, I was diagnosed with ‘Functional Dystonia’. After doing some research, I learned Functional Dystonia replaced the name of a Conversion Disorder. My gut was screaming something more was going on, but I bit my lip. I was compliant, and I did everything the doctor recommended. Botox, cognitive behavioral therapy, and medications were some of the many treatments tried; all of them were unsuccessful. I became frustrated with the medical community, as no one was taking my situation seriously. I lost trust in providers, and my guard was completely up. Getting closer to answers I met with a provider in Rhode Island, who is well known for his diagnostic work. After meeting with him for five and a half hours, there were a few medical conditions ruled in: Dystonia, Ehler- Danlos Syndrome (EDS), Thoracic Outlet Syndrome. It was determined the root cause of the Dystonia was coming from my spinal cord, and there was a strong belief I had a condition called Tethered Cord Syndrome (TCS). TCS is when your spinal cord is tethered to your tailbone. This condition is closely associated to Spina Bifida, and it’s something you’re born with. If the disorder isn’t treated immediately as a child, the damage becomes permanent; 95% of the time, TCS doesn’t show up on imaging, and the providers I needed to see were out of state. There was a major problem; I lost my health insurance six days later. I would have to wait 18 months until Medicare kicked in, in order to see out of state providers. In Massachusetts, diagnosing TCS has strict guidelines; the only way TCS can be treated, is if it showed up on imaging. Graduate school discrimination In between meeting with providers, I reached out to the Social Work program I was attending previously. I wanted to finish my degree, as I had four classes and an internship left. After multiple conversations with the Dean, and the disability program, I learned I was not allowed to finish my degree; the courses had to be completed in a five-year span, and the school refused to accommodate. By the time I was ready to go back to school, I would have to redo the entire program once again. I had to make a difficult choice, and walk away from finishing my MSW. I wasn't faking my symptoms after all August of 2017, I was referred to a physiatrist at Spaulding Rehabilitation Center in Boston, MA. My toes were still curled under my feet, and my ankles were still contracted. The physiatrist did a peripheral nerve block to numb one of my legs, to see if he could break the contractions. I was screaming as he did this. The nerve block never worked; he wasn’t able to break the contractions. He explained my toes were paralyzed and my ankles were frozen. He referred me to chief of orthopedic surgeons at Brigham and Woman’s Hospital, and informed me I was facing double amputation. "You should have gotten to us sooner" I met with the orthopedic surgeon a month later, and he was speechless looking at my legs. He kept repeating ‘there was no way someone could fake this, it’s not possible. You should of came to us sooner’. During this appointment, I was told there was a 90% chance I was facing double amputation. It was made very clear these surgeries would not fix the root cause. Nine surgeons were consulted, and no one had seen a case like mine. Little did we know, there was more to the story. I left the appointment bawling my eyes out, and angry the medical system failed me. My mental health was greatly affected, as well as my self-esteem and confidence. Between March of 2017 through February of 2018, five massive reconstructive surgeries were performed. There were many moments of concern I would need amputation during the 11-month span of surgeries. I beat the odds, and my ankles/feet/toes were saved. The root cause was undetermined; however, the surgeon was 100% sure this related back to my spinal cord; he helped me advocate to out of state providers, and believed the spasticity was caused by my spinal cord. Final puzzle piece is put together Medicare kicked in, and I had the ability to go back to Rhode Island to meet with providers, who specialized in TCS. Many tests were performed, and the next steps was to meet with the neurosurgeon. When I met with the neurosurgeon, I learned more than I was anticipating. I was born with Spina Bifida, as well as TCS. the surgery was performed 18 days after the initial appointment with the neurosurgeon. My mission to help others Throughout this chaotic journey, I wanted to pursue my dreams of helping others. There were many life lessons I've taken away, including how to advocate for yourself. Disability advocacy is close to my heart, and there aren’t enough resources to assist with the disability community. Individuals who have a disability are often labeled, and targeted towards discrimination. It isn’t uncommon for someone with a disability to feel they are alone. I became a Motivational Speaker, focusing my work on disability advocacy. My mission is to educate others how it’s possible to overcome life changing obstacles. A disability should never stop you from living life to the fullest. Life throws you bitter lemons, and you must find a way to make a sweet lemonade.

Where have I been all my life? Trailblazing my next chapter Where have I been all my life? A few years back I was scrolling on Pinterest and saw a quote that absolutely resonated with me, "Be who you needed when you were younger." It was around that time when I had taken ownership over my life, my story and my future. I am a preschool educator, and an advocate for people with differences and disabilities. I am entrapreneur and an author. I am a go getter and dreamer. I often hesitate to lead with this list of titles, but why should I? I'm killing it at 30. I'm killing it at 30, because I now own the manuscript of my life. I was born with a laundry list of craniofacial anomalies that at the time seemed unrelated, according to the doctors. I had a cleft lip and cleft palate, craniosynostosis, midline deformity... etc. Fast forward many years later and we have been introduced to the term Craniofrontonasal syndrome- in short, the laundry list. When I was a kid, my mom kept my days filled. We went to the park, we went to the museums, I had play dates, went to school, just like everyone else. I also had surgeries scheduled, tests scheduled, doctor appointments, specialists and the inevitable sick days. Being a kid with any differences can be isolating, lonely and terrifying, at least it was in the 90s. Any time I had to go to a doctor appointment, a surgery prep, or the like, I would nearly have a full fledged panic attack. These moments were completely out of my control, and so, I would give in to the fear of the unknown and in later years, the fear of the known. My mom was always there to make sure that I was well taken care of. My mom was my advocate when I was younger when I didn't know how to speak up for myself. Growing up I knew nobody else that looked like me, or had any related experiences, and while times with friends and family were joyful, I unknowingly had wished someone would be able to relate to me. There were many times during those important developmental years that I had cried and wished that I looked "normal." I questioned why I had to go through so many surgeries, why people stared, why children could be so rude. These were things I thought about as a child, along with all the typical thoughts of the joys and struggles. Flash forward to college. My mom had read an article in the local newspaper about a little girl and her mom. The little girl was born with Apert Syndrome. Her mom had been traveling to schools with her daughter talking about differences and choosing kindness. It happened to be that we connected and Kerry and Mary Cate would be visiting a school not too far. My mom and I had the opportunity to meet the Lynchs and hear Kerry speak. For the first time in my life, I had met someone who understood. We have since become wonderful friends. At the time, I was majoring in photography and we had been challenged to do our final exhibition on something that had strong meaning to us. Another first, I had finally found an outlet to express my feelings about my own experiences with my physical differences. The photo exhibition was an incredible success. This was a pivotal moment. From that point on I had a way to gain control over my story. Craniofrontonasal Syndrome may have dictated my history but I would dictate my future. Since then I have found a community, my tribe, an incredible world of people with craniofacial differences, with all types of differences, people that get it. I felt that I found long lost family, family that I never knew existed. I have spoken at a dozen and a half schools, camps and community programs in the past three years, started a platform to promote kindness, awareness and understanding of physical differences. I have coauthored a children's book, The Courage to Be Kind, about this topic and I have been part of several campaigns for non profits with a similar message. I am proud of who I am becoming. I have fought, clawed and crawled to get to this point and I am nowhere near finished. Craniofrontonasal syndrome no longer owns me, but it will always be a part of me, affecting me in various ways but I would not be the person I am today without it. If I can be of support, guidance and hope for one child or parent of a child born with a craniofacial syndrome or anomaly, I am fulfilled. Check it out! Here is a link to my coauthored children's book, The Courage to Be Kind. https://www.archwaypublishing.com/bookstore/bookdetail.aspx?bookid=SKU-001044124 Interview with the non profit, Changing the Face of Beauty! https://www.archwaypublishing.com/bookstore/bookdetail.aspx?bookid=SKU-001044124 Interview with the non profit, Sprecial Books by Special Kids! https://www.youtube.com/watch?v=RSn47gp28i4

Adaptive Self Defense My name is Maximiliano. I have been training Jiu Jitsu for over nine years. Six years ago I fell off a balcony, and now I am in a wheelchair. Today I teach Jiu Jitsu and self defense to people with limitations. I have worked with amputees, people with SCI, CP, Autism and many more limitations. Jiu Jitsu is the art of leverage and can build confidence, body awareness & strengthen our abilities. You can learn more at IJJWLF.com I also started a Para Jiu Jitsu Magazine that highlights the benefits of Jiu Jitsu for those with limitations. It’s packed with techniques and stories from people with all kinds of limitations just like you. It’s a free PDF magazine you can download at PJJmag.com

"One should not wish for an easy life but courage to endure tough one" I have been living with neurological Lyme disease for 18 years. Five years ago I started antibiotic treatment which gave me a seizure and left me using forearm crutches to walk. I have been through several unsuccessful treatments since and I have been using a wheelchair for a year. I have been unable to leave my home for a year and have been confined to my bedroom for 6 months. It has been very hard to not to leave my home to participate in social and physical activities. Lyme disease has led me to embrace the Chinese saying that "One should not wish for an easy life but the courage to endure a tough life."The adversity of Lyme disease has allowed me to expand my energetic boundaries and elevate my consciousness to a higher level. I was no longer able to escape my thoughts and mind with work and activities and had a choice to dwell on the negative or to look deep within myself to improve my inner being. I choose to use my mind to cultivate my consciousness through reading, drawing, breathing, positive affirmations,and meditation. Defeating Lyme Disease When you expand your energetic boundaries it allows you to embrace the full spectrum of vibrant energy and gives you perspective on the preciousness of life. This expanded consciousness and energetic boundaries has been a true gift given to me by this illness. It has allowed me to heal many of my spiritual and emotional issues. With this gift I realized that it is crucial to keep your spirits and soul in a good place by channeling your energy into positive outlets. I put my energy into designing lyme warriors t-shirts and then a cartoon apparel company. This positive outlet has given me hope and let my spirit know that I am not giving up there is going to be better days head. When I do defeat lyme disease I will make it my purpose to raise awareness about the illness and show others how to keep their spirits high in hard times.

Jonathan has taught us so much! Our son Jonathan was born with a very rare genetical desease: a form of primordial dwarfism called MOPD TYPE 1. To our knowledge there are less than 100 children with this condition - WORLDWIDE. Jonathan is extraordinary small (only 63cm at the age of 3,5years), has multiple malformations of his brain....and -for us the most shocking part!- a very low life experience. BUT: we are happy, although this fate is very hard. With our Facebook- and Instagram-Accounts we want to give people with the blow of fate a little hope, a little courage....and tell them: "Never give up!!! Keep on fighting, it is all worth!!" Jonathan has taught us to ENJOY every day like it is the last one. Let him teach YOU, too!!! And see what a beautiful little sunshine he is....

Adversity People always forget, no matter how easy or hard adversity is, you should always be happy. That is our sole purpose in life. I live with a disease called SMA and I constantly find tedious sittuations when I try to do something physical. That gets me down sometimes but I always remember that my circumstances formed me as the person I'm so proud of.

Special needs dad Hello! So I guess I should start by introducing myself. I'm Jake and this is our first born, Eden, who has given me the most honorable role of being a special needs dad. Eden was born with a rare brain malformation called Lissencephaly, which literally means she has a smooth brain... which we had zero idea about until she was 6 months old. I have been with my wife, Nat, since we were 16, and we also have a 'neuro typical' daughter, Emerson, who is 1.5. I wanted to start sharing about our life and my experiences as SN dad as I haven't found anyone I can quite relate too, so hoping this may help someone else in a similar position. Although I'm sure you wouldn't believe it but, having a child with special needs is such a blessing, and has definitely change our lives for the better. It wasn't until Eden was diagnosed that we have been shown just how much kindness and love there really is in this world. Eden Grace And now to explain our life with Eden, and we might as well head back to her early arrival. Eden was born at 33 weeks (7 weeks early) she only weighed 1.6 kg - our tiny little girl, so fragile yet so strong. She never once needed help breathing, which for her gestation and weight is 👍 She spent a month in hospital, the first week in a humidity crib, holding her was kept at 10-15 minute a day max, most of those days we took in turn. It was heartbreaking but we were absolutely ecstatic and being with our first born, I didn't know I could love someone so much! We took her home after 4 long weeks and went back to our pediatrician every four weeks and everything was going as it should. At five months they noticed she had low muscle tone, which is not uncommon, especially in premature babies, so we started seeing a phyiso who assured us she would be strong enough in no time. Loving our eden Fast forward a month to Christmas, Eden is 6 months old and we started noticing her shrugging her shoulders every time she woke, followed by a poo and not too long afterwards she would be back asleep. Over Christmas and the NY week, these shrugs would become more intense, and her whole body would gently squeeze inwards. We spoke to a nurse on call and she advised we head to RCH. We arrived in ER later on a Saturday night, and were admitted into the neurology ward and I stayed with her while Nat headed home. No one had mentioned seizures at this stage. I was told to ring the buzzer if she had any more then 5 tenses in a row, which happened in the morning and it very quickly escalated. The nurse came in and she hit the alarm, which brought a big team of docs in, I was pushed out of the way and my little girl lay out of my reach surround by stranges and oxygen mask and meds. That was the scariest moment of my life. I was completely helpless and was pleading for it to be me instead of her. 19 minutes of hell. Thankfully, arguably the best Neurologist in Australia came in with the emergency team and very quickly recognized the seizures and calmly explained them to me when it all calmed down. He suspected West Syndrome, which is a specific type of Infantile Spasms, but we would have to wait another day for an ERG to confirm before we could start medication. Over next 36 hours Eden was seizing every few hours, aways needing 2 doses of rescue meds to get it to stop. She also had an ERG and an MRI. The Monday night we got the confirmation that the seizures were in fact West Syndrome, which ment her brain was in complete chaos/epileptic activity 24/7, which is extremely dangerous and we had to start an intense 6 week course of steroids to hopefully get them to stop ASAP. Again no one eluded to us the concerns of the cause of West Syndrome and we sort of thought we were in the clear if the steroids worked... Tuesday morning we we're ushered into a conference room full of about 8 people who all stood as we came in and awkwardly introduced themselves and their title. More Neuros. Counselors. Social workers. And one very kind nurse. The next few hours are a blur really. So many words we've never heard before. So many tears. Anger. Disbelief. Numbness. Lots along the lines of she will never walk. Never talk. Unlikely sit. We don't know how much she can see. Or hear. Seizures. Lots of seizures as she gets older. But she will get older. And 'her personality will shine through'... Nat says she was fighting the urge to open the door and throw herself over the edge. People who are taken into those rooms are never getting good news. Within an hour of getting this diagnosis spewed at us my sister and best friend walked into Edens room in hospital. They literally held us up and cried with us. Picked us up and walked us out of RCH promising to stand with us forever. Eden was discharged and we were free to leave within another hour. Wtf. My parents came to see us later that night, I broke down and wept and my dad held me, my heart was broken, I asked why? Why Eden? Why? The next few days are more of blur. We didn't remember her diagnosis. Just something along the lines of thick lining of the brain... Physically felt as though we had no strength. Walking felt impossible and breathing hurt. Really hurt. And my sister and our best friend Lou made sure we were fed. They sat with us in silence. Held us. And loved our Eden as if nothing had ever changed.

My Two Legged Journey Hi, I'm Morgan Stickney (@morgiepoo_16). I am a 21 year old competitive swimmer and a pre-med college student. Six years ago at morning practice my foot began to hurt and we later found out I had chronic sesamoiditis. A surgery was performed to remove the bone, but the pain remained. Another surgery took place to remove the second sesamoid because it had shattered (which is highly unheard of), but still the pain persisted. My surgeon and I decided to do five surgeries in one with hopes that something being done could help with the pain I was suffering from, but unfortunately the surgery not only failed but I developed a major staph infection that we did not catch soon enough. On Halloween of 2017 I flew home from college and had emergency surgery the following day to remove all of my hardware and receive IV antibiotics. At this point I was just thankful I still had my foot. But unfortunately I was in agonizing pain all the time. This pain was beyond crippling, but I still continued to push through my studies in school, but I was still missing my greatest coping mechanism: swimming. A New Beginning On May 14, 2018 I had a below the knee amputation that forever changed my life for the better. When my surgeon woke me up from surgery he had told me that my bone was completely dead inside my foot and that was causing a large majority of my pain. Three weeks after my amputation I went back to the operating room because the skin on my leg was turning necrotic. But even throughout the bumps in the road I was immensely blessed to be in an experimental study. Because of the type of amputation I had received, I am now able to connect my mind with prosthetics. And just four months post amputation and only four weeks of practice (after two years off) I swam in my first competitive para meet and qualified for USA Paralympic Emerging Team! Having a positive outlook and surrounding yourself with others that will support you is key. Without my amazing medical team and fellow amputees I would not be where I am today. I'll rise up!

Our daughter Eden Hello! So I guess I should start by introducing myself. I'm Jake and this is our first born, Eden, who has given me the most honorable role of being a special needs dad. Eden was born with a rare brain malformation called Lissencephaly, which literally means she has a smooth brain... which we had zero idea about until she was 6 months old...but more on all of that later. I have been with my wife, Nat, since we were 16, and we also have a 'neuro typical' daughter, Emerson, who is 1.5. I wanted to start sharing about our life and my experiences as SN dad as I haven't found anyone I can quite relate too, so hoping this may help someone else in a similar position. Although I'm sure you wouldn't believe it but, having a child with special needs is such a blessing, and has definitely change our lives for the better. It wasn't until Eden was diagnosed that we have been shown just how much kindness and love there really is in this world.

My altering life story & how I survived I am a 22 year old women. December 7, 2017 will always be a day to remember. I was on my way to school when a man hit me going 60 mph in the wrong direction. He hit my driver side head on. When he hit me, the steering wheel broke off in my stomach and moved my intestines up to my chest cavity. My left lung was punctured and my diaphragm and intestines were ruptured. I had to have three emergency surgeries to fix my stomach, diaphragm, lungs, and legs. My legs were stuck under the hood of the car and tires and were instantly broken. I also suffered third degree burns all over my face from the battery acid. My eyes are completely damaged from the acid. I lost complete peripheral vision and my cornea is ninety percent damage. I tried my best to stay alive at the scene, but eventually I lost consciousness. The paramedics had to use the jaws of life to get me out the car. They called the trauma unit ahead of time and rushed me to Kennestone Hospital. My chances of survival were small. The doctors did not think I would make it even after the emergency surgeries. I had lost so much blood that I eventually had a stroke. I now have metal rods and plates in both legs. I was rushed to the ER on Christmas day and twice in one day on New years from complications. This was a very hard time for me. Let’s just say I know what a miracle looks like! I made it through all odds counted against me. I would not have made it without my faith in God and the love and support from my family and friends. I had to learn how to do everything on my own again. Walking was definitely my biggest challenge. The man who hit me was charged with reckless driving with a suspended license and only spent three days in jail. He did not have insurance, so most of my medical bills have now been sent into collections. I owe over $500,000 in medical bills and have not been able to get proper treatment from the case. With all that being said I am just thankful for being able to have a second chance at life. When your life flashes before your eyes you have a glimpse of everything that you love and realize the little things you may take for granted.

Aspring CoverGirl Uses YouTube Channel to Inspire Others Hi everyone! My name is Michaela Davert. I am 20 years old and I was born with a disability called Osteogenesis Imperfecta (Type III). Osteogenesis Imperfecta is a connective tissue condition caused by a lack of collagen. Type III is the second most severe type. Collagen is one of the most abundant proteins. The lack of this affects, nearly every function in the body. This disability does not affect my intellectual ability whatsoever and that is a common misconception because of my height. The main functions of the body that is affected are my bones are extremely fragile. It also affects my height to which I am only 2ft, 7in tall. I have had 100+ fractures throughout my lifetime and about 25+ surgeries. As a society, people are trained in order to be happy or to live a successful life you have to be "healthy." And that's so not the case! Every single human being on this earth goes through something. It's life. I choose to choose joy. I would not trade my disability for the world. Having a disability has given me a unique perspective on life and I am grateful for that. I have the most amazing opportunities because of my disability. I have a YouTube channel under the username, FunsizedStyle where I do makeup and fashion videos and also about my disability. My goal with my YouTube channel is to advocate for women with disabilities to be more featured in the beauty and fashion industry. I absolutely love makeup and it's just a hobby for me. My motto is "Makeup is an accessory, not a necessity." I feel like we all have the bucket list item in our life. Mine is to be featured in a CoverGirl campaign. It would be such an amazing breakthrough to see a young woman with a physical disability as a CoverGirl. As I go through struggles, I also experience far more joys. And that's how it is for each and everyone one of us, even without a disability. I choose to choose joy!