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The Fight: Cerebral Palsy My due date was March 1st, 1997. However, I was born December 5th, 1996, 3 months early weighing just 2 lbs. At first other than my size there were no signs of any serious side effects. After a few months in the ICU, I was finally at a healthier weight and discharged. Pre-discharge some last minute tests were done to ensure everything was good to go. My mom was getting me ready to leave when the doctor came in to deliver the news that there were signs of a stroke on my brain scan. This is when I was diagnosed with Cerebral Palsy. Obstacles with Cerebral Palsy Having Cerebral Palsy, like any other disability, makes you unique compared to normal kids growing up. The ability to participate in normal activities is limited and making friends can be hard. Just going out to dinner can be super nerve wracking. You face the same challenges as everyone else growing up but having a disability adds to those challenges. Through my personal growth process I have found that blogging is an awesome way for me to express myself allowing me to get out of my comfort zone. Cerebral Palsy made me shy in the past but I will not let it control me now. Feel free to follow along with my blog at wheeliegirlvsworld.com.

Scoliosis & Spina Bifida Fighter Hello! I am Amaia Montero León (@unmilagroparaamaia). I’m 11 years old and I was born with Spina Bifida and hydrocephalus. I have a very severe neuromuscular scoliosis (approximately 80 degrees), which is confines my lungs and heart. I was immobilized for more than a year, with a plaster cast all over my body. Due to my condition, I could not go to school and lead a normal life, however I am a very happy and positive girl. I love music, singing and going to the beach or swimming pool. My parents decided to create an Instagram account to share my story and let many people know how a girl with Spina Bifida and Scoliosis lives every day. **If you want to know more about me, follow me on Instagram @unmilagroparaamaia

One meter high world My name is Francesca Moscardo and I live in Verona, Italy. I am 31 years old and I suffer from Diastrophic Dysplasia, a form of dwarfism that makes me only 98 cm tall! I have scoliosis, I can walk, but on long distances I use a wheelchair: despite this, in my life I have always done everything like other people, because my family and friends have always believed in my abilities. I studied Art History, now I work as a copywriter and I have a blog (nanabiancablog.wordpress.com), in which I tell my "one meter high world". To be very short is a daily challenge for me, but limits can be exceeded if we look at them from a different perspective! Until a few years ago, I was convinced I could not drive a car. In 2015 I got my drivers license and now I travel in my adapted car. Nobody stops me anymore!

Addy Cat: Live with Autism My daughter, Addy, will be four in November. As she sits and watches her favorite cat video and plays with her beloved cat stuffed animal, my mind tends to wander. I wander to a place where, before her diagnosis, the hopes and almost psychic-like take on the future once was. Why do we do this? We as humans constantly live in tomorrow. Not even, sometimes years from now. We set an expectation and sometimes it’s truth is but a dream we have so happily created. After Addison was diagnosed with autism at age two and a half, these visions and future we had set-up for her were slipping and fading. What I can tell you is with this, each day became our tomorrow. Seeing her right now, for who she is, and her accomplishments makes those miles into steps. Addy isn’t speaking much, and saying she is a sensory seeker is an understatement. Although she isn’t able to do what a typical four year old can, her vibrant soul has surpassed the happiness we long for in this life. Her happiness comes from things we overlook. The simplicity of seeing her favorite cat, or finding her favorite snack at the store. How is this not beautiful? But to find the greatest joy in those moments we once held in the wonder of a child’s mind. Becoming a mom was my biggest identity changer. Becoming a special needs mom has integrated an entire new meaning of ‘who am I?’ Fighting, advocating, laughing, crying, smiling and frustration is apart of who we are. As a family we are one, with autism in the picture, it has become a part of this journey we are on. Addy has been our tour guide, so to speak. Seeing her learning to communicate, not just through words, but through her big world around her, has shown me that truly, being human is a mere fabrication of what we try to rise to be. Addison has taught me so much in her short time here, and learning from her has created a view on this world that I’ve never known. It is beautiful that we similar in that we are different. Acceptance and normalcy is still protruding through our social norms, but it is well on it’s way. We cannot be held to what is expected, if we do not view things through another set of eyes, and another perspective of beauty.

Squirmy and Grubs My name is Shane Burcaw (@shaneburcaw on instagram) and I live with spinal muscular atrophy type two. My girlfriend, Hannah, and I run a YouTube channel called Squirmy and Grubs that documents our interabled relationship. In the 2.5 years that we have been together, Hannah and I have experienced some pretty weird interactions with strangers regarding our relationship. People are often astounded by the fact that we are a couple. On countless occasions, Hannah has been asked if she’s my sister/mom/nurse. On our vlogs, the questions and comments are even ruder; people often write that our love is abnormal and disgusting. All of this confusion and aversion is likely due to one of the most common stigmas about people with disabilities: that we are incapable and unworthy of romantic relationships. This is simply untrue, so Hannah and I have chosen to make our story public in an effort to normalize interabled dating. I’ll attach our first video, but there are lots more on our channel, and we post new content every week or two!

Still pressing on after spinal cord injury I just launched my new book, "You're Going to Walk"...my story of my 1979 SCI injury. It is a story of hope and courage. I wrote this story to describe the Quadriplegic life, sort of an expose' for those who really do not know. Perhaps they will understand just a little more about the struggle and hardship that paralysis is. I do hope it encourages and gives a hearty laugh to my fellow injured. But it is reaching, far more people than I thought. If you know someone who is depressed or having a difficult time with their own physical or emotional lives, give them my book. I have found that it can apply to many others in their journeys. I hope if you are a person struggling with any type of severe injury or illness that you too will try when the doctors give a bad report, that you too may find hope and encouragement to take on a new attitude and rise above it all! Keep seeking, keep knocking and keep wiping away tears so that you will find a new you!

Cancer Survivor My name is Alvin (@alvinehom). I’m a Chondrosarcoma Survivor. My journey started in October 2017. Sometimes I felt pain in my right ankle. In November 2017 bumps appeared on my ankle. In December 2017, the bumps worsened and I couldn't wear shoes. In January 2018, I had an ankle rontgen and there was fleck above my calcaneus bone. In January – February 2018, I tried several treatments from doctors. In March 2018, I had an MRI and several blood tests. The results lead the doctor to diagnose me with Bone Tuberculosis. In April 2018, I had Debridement surgery (the removal of damaged tissue or foreign objects from a wound) and the doctor took a sample to biopsy. After a week, the doctor gave me the result of the biopsy, it was Chondrosarcoma grade 3. I’ve checked with several doctors in Indonesia, KL & Penang and the result was still the same. Every doctor gave me two solutions: Calcaneus Bone reconstruction (10-15% recurrence) & amputation (0% recurrence). I’ve had a PET Scan, and the result was no spread of cancer cells and I had amputation surgery in June 2018. Now I live my life with prosthetic like normal people. I can still work, drive, and go to the gym. I hope to play basketball again. Nice to meet you guys!

1 Year Later From Becoming An Amputee One year ago on October 7, 2017, I was in an accident on vacation in Austin, Texas. I went right through the propeller of a boat and had my entire right arm severed in the water. With the help of friends, strangers, and my nursing experience, with the odds completely against me, I somehow survived that day. According to the surgeon, I should have been dead in 4 minutes. Despite the horrifying phantom limb pain, months of rehab, and suffering PTSD, I kept my hopes up. I'm not saying I never had any negative thoughts through it all but I was surrounded by so much love and support and knew I was just lucky to be alive. I'm back to my jobs as a CCU Nurse and working on call as a Forensic Nurse. I'm working on myself and my body every day and slowly learning to love myself again. It was and still can be hard to go to public places and have everyone stare or ask what happened... But I always try to keep my head high and smile at them, and if they have a problem with the way I look, well, that's none of my business. Beauty starts with yourself, in character and in strength. I am grateful every day.

Through Instagram I want to make it known what I'm capable of with Cerebral Palsy My name is Javier (@javier.garo). I am eighteen years old. I was born with Cerebral Palsy. I decided to create an account on Instagram because I want to tell people what Cerebral Palsy means, what our daily lives look like, what are our limitations, our goals and so on. I consider myself to be an active person. I ski, horseback ride & paint. I love going out with my family and friends. Although, I am 97% dependent (I need someone with me 24 hours a day), I try to live a normal life. Don´t hesitate to follow me and see all my adventures. **Follow me if you're interested in meeting me @javier.garo

All About My life living with hydrocephalus I have archnoid cysts/hydrocephalus, which makes learning anything new and remembering hard for me because I have deficits in short term memory and some other areas. I was adopted from China by my now forever family in February of 2010 when I was 8 years old. I didn't learn to ride without training wheels until 2014 when I was 12 years old because my disability makes me feel very off balance when leaning to do certain things like learning how to ride a bike without training wheels and learning how to swim, which is something I still struggle with because I still feel really uneasy/unsafe in water. I know I will learn how to swim eventually because am a person who doesn't give up easy and is very determined to reach almost all the goals I want to achieve when I either set goals for myself or when other people set goals for me. My favorite quote is "Be Yourself Because Everyone Else Is Taken" because it has a very strong message about being yourself and how you shouldn't worry about what other people think or say to you because you are the only you out there in the world and no one else is exactly like you!

What is Pierre Robin Sequence? Pierre Robin Sequence (Pierre Robin Syndrome) is a very rare genetic condition that around only 50 babies a year statistically are born with. This is where their chin is underdeveloped (micrognathia) and the tongue is placed further back (glossoptosis) and there is a blockage (obstruction) of their airway. In tow with this is also a cleft palate (roof of your mouth). Our Journey With Isaac Isaac was born late by 5 days with a spontaneous labour starting in the KFC drive thru. After two hours of labour, Isaac was born with his dad, nana and grandma waiting for him in the delivery room. But we had a problem before he even exited the birthing canal. The umbilical cord was stuck around Isaacs neck, tightening as he descended. The emergency button was pulled, Isaac was whisked to the side while we watched, which felt like hours. He was given pediatric resuscitation and rescue breathes and then placed on my chest. A few hours after birth, Isaac wouldn't latch to the breast or a bottle. Every midwife we saw during the night blamed this on his tongue being tied. His tongue kept falling back. You could see his face didn't look like a normal baby's face. Eleven hours later a peaditrican did his newborn check. She used a metal and what I say speculum and pried my son's jaw open and told me he had an incomplete cleft palate of the hard and soft. He received a nasogastric feeding tube immediately. We were transferred to the birthing ward and all the midwives were amazing to us. The next day a cleft nurse tried to feed Isaac who noticed he couldn't coordinate and was turning blue. We were then informed he had Pierre Robin Sequence. Our Hospital Stay Isaac never went into the neonatal unit, as they had no room for him and couldn't transfer him to another hospital as was too risky. We were placed on the normal cleft ward, shown how to tube feed and position him for his breathing. After a short eight days we went home. Life was great, we had a new baby and our daughter was a big sister. It was wonderful, but scary. We couldn't do much as Isaac could only manage 10-15 minutes in a car seat before his oxygen levels decreased. Our bubble ended after six days. We went back to the hospital due to constant vomiting and blue spells, and from then, I begged for him to have a tracheostomy and a g-tube. He wasn't able to breathe properly, even upright in your arms he was turning blue and struggling to breathe. He was struggling massively to gain weight, but they all refused. We spent another four months in the hospital trying different techniques to keep my son alive. He would stop breathing, his heart stopped on occasions, he would have up to 38 apnea attacks a night, he would lose consciousness, he would just deteriorate in any way he could. At five weeks old he was taken for his first emergency operation as his airways kept closing. This procedure required Isaac to have dilation of the nasal passage for his nasopharyngeal airway. After that I learned how to change and make the NPA (nasopharyngeal airway) and pass the NG feeding tube so that my baby could come home, which he eventually did. Cleft Palate Repair Isaac had his cleft palate repaired on 19th April 2017, exactly one year after his first birthday and that by far was one of the scariest moments of my life. The repair didn't go to plan for him. During the operation he struggled to breathe and required going into the pediatric intensive care unit with a new NPA fitted, on oxygen and linked to lots of machines. It had been seven months since he lost the NPA and six for the NG. At one point in the hospital, the nurses had been breathing for him for two hours and they were ready to incubate him. Isaac being the joker he was, sat up and looked around, so they reduced his morphine. It took him four more days or so to wake up and then his big sister came to see him, which was the best moment of that crazy time. Two Years Down The Line. Isaac is now two and a half years old and one year post cleft palate surgery. He still struggles to gain weight, struggles to grow, has chronic otitis media effusion, moderate hearing loss in both ears, he's non-verbal, has a form of rickets, social autism, global development delay, lose and weakened joints suspected to break at anytime, chronic heart defects (atrial septal defect, patent ductus arteriosus, patent foramen ovale), persistent left sided superior vena cava (SVC), post traumatic stress syndrome and is a SWAN (syndrome without a name). He still sees his cleft surgeon, cleft nurse, speech and language therapist, pediatric psychologist, health visitor, general practitioner, genetics and orthotics doctors. He just had his third operation and booked in for his fourth operation to have multiple teeth removed of what we know, but this one will be his riskiest one. Our Now Life. Isaac is in pre-school, he knows makaton, has such a big personality, does everything nearly what we were told he would never do and biggest of all, he has been a big brother for nearly a year. No matter what gets chucked in his stride, he takes it on his chin and gets up and goes about his life, being the best, amazing, loving, handful of a little boy. And if someone had told me this two years ago when I was in a place I never thought I would be, with a child I didn't know was going to live or not within that same day, I wouldn't have believed it. Life has a funny way of throwing things at you, but I have realized, we only get dealt what we can handle. And if you're a new PRS, cleft, CHD mama, then believe me when I say, you can do this. You are amazing and all your worries will sure as hell be worth it. Love to you all! Isaacs mum, Sonia x

Spinal Stenosis & my recovery I’m Tiffany and I'm 27 years old. I became a tetraplegic in November 2009. I was diagnosed with Spinal Stenosis from C2 to C5 in 2009. Following tests by a Neurologist I had a procedure called a laminectomy on 26th October 2009 with a spell in spinal rehabilitation in months to come. I developed insecurities, isolation, depression, anxiety and couldn’t carry on. I had everyday battles physically and emotionally. I felt as though I was an outsider and broken! I had to regain my confidence and self-esteem as of which I haven’t fully regained. I started live by the quote: “Mind over matter, if you don’t mind it doesn’t matter.” I have found my love for makeup again doing it my unique way with how my hands let me get better at it the more I do it. One thing that has helped me in the time of me being paralyzed is the love and support that I have received from my family because without them I wouldn’t be where I am now and for that, I am truly grateful!