Search

Hi, my name is Gabrielle! I am 33 years old and I have Ankylosing Spondylitis. The diagnosis is time-consuming and complex. Mine took over 20 years to close. Research requires medical interest, patience and resistance from patients, and understanding of those around us and this ends up being a very difficult part. When you are a child and feel the pain that makes you lose sleep, causes weakness, causes you to fall from your own legs, causes episodes of fever "for no reason", tiredness, fatigue, sadness and people still call you weak, it ends up making everything more difficult. I grew up taking medications that didn't work and having my credibility put on the line countless times. Many of my friends and family didn't believe what I said, even though my body showed it and my exams proved it. But it was never enough, even today for many it still isn't. And I learned that it doesn't matter so much. When you see someone using a walking aid (cane, wheelchair, etc.) every other day, don't assume they are trying to get benefits or attention.

A little Intro I'm a model, content creator, and mother of two. You may know me from social media, or maybe you've seen me in publications like Twisted Edge. I've accomplished a lot in my life, and I've done it all while living with Cerebral Palsy. Some of you might have heard of it. Especially if you have been following my modeling journey. What is Cerebral Palsy? Cerebral Palsy is a neurological disability caused by receiving a traumatic brain injury before or at birth or during early childhood typically before the age of five. There are four different types of cerebral palsy, and it is somewhat varied and how it affects the individual that is diagnosed with it. I like to think of cerebral palsy as being on more of a spectrum. How severely or mildly it might affect the person living with it depends on the severity of the brain injury and where the brain injury occurred. Cerebral palsy is actually a fairly common childhood disability although the disability follows you throughout your life there's currently no cure for people who have cerebral palsy but it can be managed. I actually know several people personally that also have Cerebral Palsy some of them are affected similar to me and some of them are affected very differently from how I'm affected. I can't speak for their experiences having Cerebral Palsy but I can speak for mine. My experience with Cerebral Palsy So I have a type of Cerebral Palsy called spastic diplegia. My Cerebral Palsy mostly affects my gait and my legs, my ability to walk. But if I'm being honest it affects all of the muscles in my body in different ways. Spastic diplegia pretty much describes how my cerebral palsy affects me. My muscles especially in my legs are tighter than what they are supposed to be I have very high tension in those areas And I sometimes have muscle spasms. That's not the only way that it affects me but that's a pretty good brief description I think. I can walk and I can move around stand up and do things pretty independently. I just need some help I can't really walk very far at all independently so I use a walker mostly. I used to use crutches primarily until I had kids then I decided that it was safer and easier to move back to a walker. I can also use the walls in my home to help me walk. I can lean up against things I can hold on to things to help me stand and move around without my walker. I also have a power chair again just to make things a little bit easier for me. I've had Cerebral Palsy since birth. My injury was caused by medical malpractice. Long story short the umbilical cord got wrapped around my neck and the medical staff that was present during my birth were not as quick to react as they should have been and by the time they had cut me out of my mom I had gone too long without oxygen by the time they revived me I'd already suffered the bleed in my brain. So I've had Cerebral Palsy my whole life. Most people that have it have it since birth but that's not always the case. I've met some people that have it that didn't suffer their traumatic brain injury until a little bit later but before the age of 5. Despite having a physical disability I always did everything I could to not miss out on anything. In some ways, I feel like that was a really good quality that I have but in some ways, I wanted so badly to be seen as normal by others that I pushed myself a little too far ignoring my limitations and allowing others to do the same. Now that I'm older I know that wasn't the healthiest behavior. Growing up I went through a lot of trauma And I also got bullied a lot for having a disability. As a result, I thought the solution was to try to appear as normal as possible at least as far as pretending like my disability wasn't important or that big of a deal. As I got older and started coming into adulthood I learned to love, not only myself but my disability too. I attribute this change, in large part to my modeling career. My Accomplishments and Goals I started modeling 10 years ago when I was 19. I fell in love with it instantly. For a few years now I like to use my platforms to advocate for disabilities and promote acceptance and body positivity. Over the years I have modeled for well-known agencies, I've been internationally published in popular magazines, and I've even acted in some Indie films. I'm really proud of all I've accomplished so far and I hope for even greater accomplishments in the future, whether that be through modeling, advocacy work, or maybe something new. I hope I show people that no matter what cards life deals you with, you can do whatever you put your mind to.

My story Hi, my name is Rustemov Yerkebulan (@yerkona) I'm 36, and I'm from Shymkent, Kazakhstan 🇰🇿 In October 2018 my life was divided into before and after. I suffered a fracture of the cervical vertebrae at the C7 level during a scuffle. I am happy that I didn’t break down, didn’t lose heart, didn’t lose faith, and I don't forget how to dream. I’m very thankful to my family and friends🙌 Throughout my life, I have always strived to be positive! I want to say, to all people who find themselves in a difficult situation pass these tests with dignity. Good iman and good health to all 🙏✊

The last 3 years My name is Jessi. 3 years ago I was diagnosed with FND (Functional Neurological Disorder). I was diagnosed after I had a heart ablation for one of my heart conditions, and I had an infection spread from my heart to the head. FND is a really hard condition to be diagnosed with as every time I go to the hospital or an appointment I have to explain it to people. 5 years ago it stopped being classified as psychological and switched to being classified as Neurological after they found changes in fMRI scans, but a lot of people are still stuck with it all being in my head. I have to keep trying to explain to people it isn't, and that I am constantly working so hard to improve myself and the condition for me. Since the FND diagnosis, I have been diagnosed with 5 heart conditions, conditions in most other organs, had many, many, many surgeries, and sudden sensorineural hearing loss. Before this condition, I only knew about the heart condition, but I used to work as a nurse and study, as well as have my license and generally live life. Now I am trying to restart all over, and I have found painting is a skill of mine and joined an awesome Boccia Paralympic Team which aims to go to a future Paralympics. I still face disability discrimination in a few ways, such as being forced out of uni on multiple occasions, as well as the more obvious discrimination that many other wheelchair users find. It is still extremely hard to try to handle these new features of my life, but I am doing what I can.

The sixth self built assembled cars for kids with disabilities is on! ParaGrutaRally a unique event made by car lovers for kids with disabilities is on! The idea started in a meeting between Ziv’s son and a disabled kid named OR that suffered from a very complex disability. They got to be friends and shared their love for cars and the question was how can a self-driving car be built for Or. This inspired Teams of car builders from all over Israel to join forces to create a yearly event for self-tailor-made vehicles for kids and families. The creativity and ideas of kids have led to briefed creations from sharks to baggies and space pathfinders. All is possible if you combine dreams good people and great vibes! The only thing you need to do is Dream BIG as impossible is nothing!!!!

New Dad Seeks Approval For Life Changing Treatment Rare Disease Day is an important day to me and many others around the world who are working towards social equity, healthcare, and access to diagnoses and therapies for people living with a rare disease. That last point in the line above, “access to diagnoses and therapies for people living with a rare disease” is one that I want to draw attention to today (again) – and it may come across as a little blunt. I was diagnosed with Spinal Muscular Atrophy III, a form of muscular dystrophy when I was 13 years old. To make an otherwise long story short, in those 20+ years since then, the disease has progressed to the point where I am now unable to walk, have a hard time standing, lifting objects over a few pounds….the list goes on. Basically, with each day that goes by, I am losing more and more independence. There are currently two health treatments that Canada approved for citizens living with #SMA however, due to restrictions in some provinces around age and ambulatory status, I, along with other adults in Ontario, am unable to access either of these treatments. Anyone living with SMA in Quebec can access treatment and other provinces have plans in place that allow adults to apply for and access treatments. Federal government employees with SMA have had coverage for treatment since 2017 as part of their health care plan. Around the world many countries are making sure their citizens have access to these life-altering treatments, for example, the UK has recently opened up access to treatment for everyone with SMA, of any age or ambulatory status. As a new dad, the thought of not being able to hold my son for much longer and being severely limited in what I can do with him not only scares the shit out of me but also angers me. It angers me that our provincial government is unwilling to follow the lead set by other provinces such as Quebec, and open up access to treatment for EVERYONE, regardless of age or ambulatory status. It angers me that my application for treatment has sat on the desk of Christine Elliot since AUGUST 26, 2019, yes, 2019. 917 days. 2 years, 6 months, and 2 days to date. The fact that for over 2.5 years I could have been receiving life-changing treatment is disheartening, frustrating, anxiety-inducing, stressful, and just pathetic. I try not to look back on “What Ifs”, but sometimes it is hard not to. I am not here looking for sympathy. I am here looking once again to make a change and draw attention to this issue in hopes that I, as well as other adults living with SMA, can get the treatment they need and deserve. These are people’s lives that hang in the balance. I am fortunate enough to be a featured story in the March 2022 issue of MacLean’s Magazine, which is out on newsstands now. That article is attached here for further reading. Please feel free to share this as much as possible. I personally feel that 2022 is a “make or break” year for me when it comes to accessing treatment in Ontario. I am trying to stay optimistic that this is the year when adults, regardless of age or ambulatory status, will have access to these life-saving and life-changing drugs.

Designing amazing adaptive costumes Another year has passed but the tradition continuous. The Dream Costumes imitative by Product Design College Sami Shamoon in Holon and Issie shapiro continues. This year Erez has decided to join the Israeli military in. A Tank ! Designed by 2 ex IDF tank operators they have made an amazing costume around Erez’s mobile chair, creating the right accessories real uniform helmet and a Madonna microphone :-) Erez was empowered and has a blast ;-) Great ideas Great people When great ideas meet great people you make great projects that last and continue to thrive This project demonstrates what yoocan is all about, bringing joy, inclusiveness surprise and delight to all participating, kids parents, builders and designers. @yoocandoanything

Beginnings Hi! My name is Lorraine, I'm 26 years old and I live in Brazil. I was diagnosed with an autoimmune disease (NMO). Within 24 hours after my diagnosis I was paralyzed. I have been using a wheelchair for over 2 years. It's the biggest challenge of my life, but the one that gave me the most evolution. I fight prejudice daily, I fight to have more independence and acceptance. It's hard, but I believe there is a higher purpose! I support paraplegic women and believe in a more accessible world. That's why I fight and that's why I move forward. Beginnings Hi! My name is Lorraine, I'm 26 years old and I live in Brazil. I was diagnosed with an autoimmune disease (NMO). Within 24 hours after my diagnosis I was paralyzed. I have been using a wheelchair for over 2 years. It's the biggest challenge of my life, but the one that gave me the most evolution. I fight prejudice daily, I fight to have more independence and acceptance. It's hard, but I believe there is a higher purpose! I support paraplegic women and believe in a more accessible world. That's why I fight and that's why I move forward.

My life is made of transformations, like a butterfly My life is made of transformations. It's a story. I was born and reborn every day. I came into the world with a disability. I was born, I got to walk and even in childhood I discovered that I would stop walking. When I least expected it, I stopped. As a teenager, I also discovered that I had a curve in my spine, scoliosis, all as a result of the disease I have and I LOVE. As incredible as it may seem, even with all the evil looks and prejudices that exist, in the society I live in, my disability is my greatest strength. Yes, it was with it that I learned to be strong. I've had my hard times, I still do. But as Frida Kahlo, my favorite artist, says, “The most powerful art in life is to make pain a healing talisman. A butterfly is reborn as a flower in a party of colors!” And that's how I go on... painting my path and my life. Carolina Monteiro

Just a normal day On October 8th, 2017 I went to work at the vet as per usual. It was a busy day of back to back operations. Around 2pm I noticed I hadn’t been to the toilet. I had back pain and pins and needles in my legs. I narrowed this down to a possible kidney/urine infection. I called the gp who sent me to the hospital for a bladder scan. I was in urine retention and they gave me an indwelling catheter and asked me to wait to be seen. I took a seat outside and noticed the pins and needles were progressively getting worse and my lower limbs were becoming numb. A doctor noticed I was struggling and admitted me to a ward . Once I got into the bed I didn’t get out for 3 months. After multiple tests such as lumbar punctures and MRI. I was diagnosed with Guillain Barre Syndrome. I had 5 days of IVIG treatment and this stopped the progression of GBS. It’s known as an acute disorder, which Is very rare. It was never formally informed on why I got it. I received intensive physio and I continue with life now. I also go horse riding with the RDA and go to the gym. I’ve used a wheelchair since and it’s given me my life back. I’m retraining to be a play therapist. I’ve had a little girl since and nothing has stopped me. Mobility aids are things that enable me to live. I don’t mind showing my catheter and I don’t feel embarrassed! What I would say to anyone going through a similar experience is to reach out and speak to others.

Dream Even if You have CP Hey. I am Kathleen D. Cruz @iamkathleencruz from the Philippines. I was diagnosed when I was eight months old with cerebral palsy. I cannot walk and my hands are spastic. So my feet have become my hands. Having a CP is hard especially if you have limitations but thankfully I have my parents and siblings to support me. Since I was sixteen years old, I started my dream of becoming a writer because when I write, I feel I become a different person. I can create a different character. I can be who I want to be. It felt like I was creating a different world in my reality. I can find someone who really accepts the person as who she is. Writing is not just a hobby, it has become my world. It makes me happy. Even though my life has struggles and limitations, I will never stop writing. There have been many rejections when I was submitting my stories to the publishing companies in the Philippines, but rejection became my strength. I pushed myself more to become a better version of who I was. And when the doors closed, one window opened for my dreams. I became a co-writer on a short film named Sulat ng Aking Mga Paa (My Feet Can Write). Since then, that project boosted my confidence and I started to write more and submitted my work in a writing contest. I did win and become an aspiring writer and I had some self-published books. Having a CP is my life, there are my difficult days and struggles, but you can push yourself even if there are limitations. Life is too short to cry, to self pity, to ask yourself why I am this kind of person. So follow your dreams and share your story to the world.

Born at Just 23 Weeks, Here is My Daughter's Story Meet Everleigh, my youngest daughter who was born at 23 weeks due to incompetent cervix on January 8, 2020. Everleigh spent 14 months in the hospital and was able to come home in March 2021. Everleigh is diagnosed with Prematurity (23.5 weeks GA), Cerebral Palsy, Bronchopulmonary Dysplasia, ventilator dependent secondary to chronic respiratory failure, history of pulmonary hypertension (she healed from this before we left the hospital), GERD and delayed milestones of childhood. My pregnancy started out normal just like my first but at 17 weeks I had to get an emergency cerclage due to being diagnosed with an incompetent cervix. Everleigh developed severe Bronchopulmonary Dysplasia early on in the NICU due to being on the ventilator for a long length of time which also exacerbated her developing Pulmonary Hypertension. Everleigh almost died multiple times during her NICU stay. The doctors still till this day can't tell you how she is here but we knew God had bigger plans for our girl. At six months her father and I decided to advocate for the tracheostomy. We were tired of seeing Everleigh intubated and miserable and knew with continued unplanned extubations we might lose her. We knew the trach would be a game changer for her developmentally and it would help start the path of healing her lungs in a stable way. Before we left the hospital, our rehab medicine doctor diagnosed Everleigh with Cerebral Palsy. I knew this might be a possibility due to her history of trauma but it still hurt to hear the diagnosis. Her father and I grieved for a short period of time but we decided we would never let this diagnosis define her or box her in. We were able to start early intervention services immediately after we got home in March and Everleigh has taken off. Before leaving the hospital, she could not sit up or roll over by herself. Now, Everleigh is sitting up by herself, walking with a gate trainer, reaching/grasping for toys, starting to crawl and standing almost by herself despite having hand and feet aversion. Everleigh also just passed her swallow study and is able to work on feeding. I hope Everleigh's story has encouraged you. Despite the diagnosis and all the stresses that come with having a medically complex child, we are so blessed and happy! Our lives as a family are so much better with Everleigh in it and so FULL. Please let her story remind you to not let a diagnosis or situation define the rest of your life. Take each day and celebrate the small wins. But most importantly, don't be afraid to advocate for the ones you love! #Jeramiah2911