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My Muscular Dystrophy Testimony Hello Everyone. My name is Janiqua Williams (sitting.pretty.__) and I am a 25-year-old young lady living with Muscular Dystrophy. A lot of you are wondering what is Muscular Dystrophy. It is a genetic muscle disease that causes progressive weakness in the bones and some people that live with MD will lose the ability to walk and will hardly breathe on their own. Those are the few symptoms of MD. I wasn’t always in a wheelchair and on a breathing ventilator. My mom always tells me the story of when I was a baby. I was like any normal newborn baby, except I was very tiny and my legs were floppy. I had to wear a cast on my hips and legs to keep them together. It hurt her to see her baby girl that way. She told me that she knew In her heart something wasn’t right. People don’t know that you can’t detect Muscular Dystrophy as a newborn baby. When I was 6 years old, the doctors told my parents that I had a muscle= disease. Near Death Experience Some parents could not deal with their child having a condition, but my parents never left my side. My mom & dad made sure I went to my check-ups and received the proper therapy I needed to keep my bones strong. It’s crazy because I still have memories of when I used to be able to walk as a little girl. I knew I was somewhat different because I couldn’t keep up with other kids. Muscular Dystrophy causes me to get tired really fast. My legs used to weaken so much I would have to take breaks when walking. My MD never stopped me from doing anything. I was a very fun and energetic kid. Even now today I still have that humble spirit. One of the symptoms of living with MD will be eventually you will have to get a wheelchair. As a kid, you think your fine and you can do without but my parents, therapist, and the doctor knew it was coming. As I started getting older (10 years old), I was still walking but I just had my wheelchair to get me around more, because as time passed the harder it was for my body to keep up. It was this one moment in my life back in 2005 when I was 11 years old. I caught pneumonia really bad. By me having MD, my immune system wasn’t strong enough to fight back. The only memory I really had is that I was really sick. My mom and grandmother took care of me. I was going back & Forth to Jackson, Mississippi but they could never figure out what was wrong with me. Now I remind you that I was just a kid. I didn't know I was so sick, but I felt like I was dying. A few months passed, and one night my family rushed my to Delta Regional Hospital because they noticed something was wrong and I was getting worst. To make the long story shorter, I had respiratory failure. All my family and friends of the family all said that I died and came back. Even my dad told me one time “Nika, we had lost you for a minute.” I never said this to anyone but I almost have a memory. This picture where I saw all of my family crying in this room and hugging me. It’s like I was there but I was watching over my own body and just saw everybody. I just remember this light of hope that everything was gone be alright if I lived or didn’t make it. All I know is I slipped into a coma and everybody was just waiting for me to wake up. That night they raced me to Memphis, TN where I was admitted to Le’Bonheur Children Hospital. Some probably think I wasn’t going to wake up, but I did. I know I would have because I have a strong loving praying family. As time passed the doctors were trying to stabilize my breathing. I remember bad nights where I completely lost my breath and the nurses and doctors would have to call cold blue. The doctors tried breathing treatments and even an oxygen mask but none of it worked, until one day I went into surgery and a had a trach inserted. It’s a little tube they put in my airway to help me breathe. I had no other option because my lungs were failing me. So that is why I’m on a breathing machine today. By all that happening to me as a young kid, it made my bones even weaker to ever be able to walk again. Loving Myself: beauty comes from the inside out I’ve been on a ventilator since my pneumonia hospitalization. Sometimes I have bad days, but the good days always outweigh the bad. When I was a kid, I didn’t understand why my life was that way and why things had to happen to me. I feel like these things occurred with me to be a living testimony. God wanted me to live and show you all that there are such things as miracles. God made me perfectly fine and I love myself so much. My mama always taught me to love myself no matter what. Never let anybody steal my joy and I haven’t let anybody on this earth do that. I just want to let my family know you are my strength and what keeps me going in life. I’m just thankful and honored to be here and share my story because I want you to all know there is already sunlight at the end of the road. Yes, I have Muscular Dystrophy and I embrace it and all my flaws; my little fingers, legs, wheelchair, and breathing machine. I still keep my head held HIGH. I’ve grown into a little woman and have found the strength, happiness, and confidence. I’m not perfect but I’m worth it and so much more. Now as I end this, I just want to tell all the young girls and women out there to please love yourself. I know it’s hard sometimes, but beauty is in the struggle. It is important to stay positive in life. Always know if no one is there, God is. Be who you are and be great. Love the skin you’re in because beauty comes from the inside out.

New Beginnings Hi, I’m Tracey! While my life’s journey has been filled with a lot of emotional and physical suffering, it's also made me a very compassionate person. I’ve accomplished so much more than anyone expected - college degree, a career as an analyst - and now I’m focused on healing my diseases and starting a non-profit to help others. The Valleys I was diagnosed with Charcot Marie Tooth (CMT) muscular dystrophy at age three and have fought all my life. My life has been challenging: first losing my ability to walk and eventually losing my career, then dealing with severe muscle atrophy, intense body pain, joint pain, arthritis, spinal curvature, anxiety, depression, connective tissue disease, a skin disease, nerve transmission issues, and more. Last year I was bedridden and even tried to commit suicide when I thought nobody would help me fight anymore. I hit rock bottom and was saved. It all started with a prayer and a book “Medical Medium Secrets Behind Chronic and Mystery Illnesses and How to Finally Heal.” Rising Up The @medicalmedium books have given me hope, faith, and information to heal that I couldn’t find anywhere else. I’m accomplishing the impossible and reversing all of my diseases. It takes time, but I’m finally rising out of the ashes. I feel like I have a new beginning and a new story unfolding. I have a clarity that I’ve never had before. I feel so blessed that the pain is nearly gone, the depression and suicidal thoughts are gone, my panic attacks are a thing of the past, my connective tissue is repairing, my sacrum untwisted, my brain fog has lifted, my muscles are actually building, and my skin disease is clearing. I’ve been sick for so long it’s going to take time to fully heal, but I’m headed in the right direction. I have learned nothing is impossible!! Nothing can keep the light from shining bright in my life and I know that someday I’ll walk again! “You deserve to heal.” ~ @medicalmedium ‘ “For I will restore health to you and heal you of your wounds,” says the Lord’ ~ Jeremiah 30:17

Please be sure to ask your doctor before using this method as it is an off label use. If you have a spinal cord injury then I'm sure you have had to deal with a UTI at one time or another, but for some, it is a constant battle with UTIs. Within the two month period of me being in the spinal cord rehab facility, I had 3-4 UTIs and that had qualified me for a completely sterile, closed system catheter to be covered by my insurance provider. Although I was happy to qualify for these catheters, the reason I did qualify was not something I wanted. After using these closed system catheters for multiple months after leaving the hospital and taking extra precautions to keep things completely sterile, I was still dealing with a UTI almost every other week. My urologist didn't want to keep giving me antibiotics, giving the bacteria the chance to become resistant, so I began to do some research on my own. There are many kinds of catheters and many that are a completely sterile process, but how can a completely sterile process still allow me to get UTIs so often? This is when I decided to take another person up on their offer to give me advice about their method of cathing. The advice I received was essentially life changing! This person that offered me advice also had a spinal cord injury and lived in my small village. I contacted him and we set up a day to meet and discuss things. While we met he explained to me the method he uses for intermittent cathing and told me he has gone many many years without a UTI using this method. After hearing this I was hoping I would get the same results. He even bought me most of the supplies I needed to get started. What a generous offer, not only did he give me essentially life-changing advice, but he also gave me the supplies to get started! This method seemed crazy but it had proven results. First off I will list the items for the original method I used which was exactly the same as the person's method that explained it to me. Items: - Any straight catheter that is a proper size for yourself - Betadine (or off brand equivelant) - Isopropyl alcohol 91% - plastic containers with lids (big enough to fit a catheter in, you may bend them to make them fit but it needs to be able to lay flat in the bottom) - Anti-bacterial handsoap - Hand sanitizer - container to use as a urinal (an empty bottle or an actual portable urinal, anything with a removable lid will be fine) Now for the original method. -The first step: wash your hands with the hand soap and shake any excess water off. -The second step: get a new catheter and open it up. Dip the end into the betadine. -The third step: put hand sanitizer on and shake hands to let them air dry. -The fourth step: take the catheter and insert it as you normally would any other catheter. The betadine acts as a lube and also kills germs. Empty your bladder into the urinal or container. The fifth step: once you are finished urinating remove the catheter and rinse it off with water. The sixth step: put the catheter into one of the plastic continers with about an inch layer of the alcohol in the bottom. The seventh step: after you get a few catheters built up in the container with alcohol, transfer them into a dry container. Then you can use the catheter again. I would use a cycle of catheters for up to a couple weeks as long as they appeared clean. As I mentioned this is the original method I was taught and even with reusing the catheters I had eliminated my problems with UTIs. I was confused because this method seemed completely unsterile. Before this, I had never touched the catheter with my bare hands. This original method would work great for someone who has to buy their catheters out of pocket because you greatly reduce the ammount of catheters used. Also, a tip for using this method on the go is to have a third container with clean catheters (out of the alcohol) in. Then once used, put them into a resealable bag and rinse them once you get home. Then put them into the alcohol container. How I modified the method to suite me better. I used the above method for quite a while until I was getting low on straight catheters (ones that were sent home with me originally from the hospital). Once I knew this method worked for me I called my catheter supplier and changed to a regular straight catheter. Now I will explain to you how I modified this method to suit me better. I had my catheters being covered by insurance so reusing them wasn't necessary for me. This modified method also has way fewer components to it and even eliminated the need for a urinal. -The first step: take a new catheter out and put it into the betadine (I usually put just the end 2-3 inches in the solution.) -The second step: open the other end of the catheter packaging to create an "extension" for the catheter. -The third step: apply hand sanitizer and shake dry. -The fourth step: take catheter from the betadine and begin to insert it. before it enters the bladder take the packaging and put it over the end of the catheter and use it as an extension to reach the toilet or even the ground if you are outdoors in a private area. -The fifth step: remove the catheter and extension and throw it away. With my modified method I have eliminated washing your hands, reusing catheters, and the need for the containers and alcohol. I have only had a couple UTIs since using this method and it's going on 2 years now. This is a great improvement over every other week. Also, I would like to mention a tip for carrying the betadine with you. I put some into a smaller cylindrical continer with a lid that pops open and it has a small hole the catheter just fits through. This helps for if I were to accidentally drop it, it wont all spill out instantly. I always keep it inside a resealable bag to keep it from getting on things in my wheelchair bag if it were to spill. Betadine is a dark brownish-red color so it can stain, although when I have spilled it on lighter things it seems to come out fairly well. I do keep a container with me still in case I cant access a toilet and I'm not in an area I can go outside. I hope this method can help people struggling with UTIs. I really hope that me sharing this method helps someone out there that is struggling with UTIs. I really suggest asking your doctor or urologist first. I asked my urologist after I had already switched to this method and he told me as long as its working that I could continue. This may not be for everyone because everyone's body is different and if you have limited hand control it may be difficult. The person that I mentioned learning this from is a quadriplegic and had loss of hand control, so it is possible to use this method as a quadriplegic if you are good with using your hands without function. I would also like to mention that this method most likely won't help you get rid of a UTI if you already have one. Clear out the infection first and then try this method if you would like.

What is an Invisible Disability? When most people think about someone having a disability, the first thing that they think of is someone in a wheelchair, which is fair because of what society perceives as disability, but disability is a spectrum. Not all disabilities are visible (example mental disabilities). What doe that have to do with me? Being legally blind, I still have some remaining vision. I always travel with my cane on me but not always out. As well, I don't use it at school. When I don't have my cane out I'm considered as having an invisbile disability meaning that there is no visible sign that I am disabled. For me, this means that I have to verbal voice that I cannot see, which as you can guess results in some trust issues. When I tell someone that I am disabled (and my cane is not out) people often accuse me of faking my disability. Why is this an Issue? This is an issue because it can result in me not getting the assistance of help that I need. It's also just not ok because you can't assume what someone is going through. I know that I constantly have anxiety when my cane out for the fear that people won't believe me or help me when I ask for it. I think that the reason that people second guess if you have a disability is because there are people out there who fake disabilities (which I'd like to state is SO NOT OK). It's the same with service dog users and people putting fake service dog vests on their pets. An example Last week I got on the bus (for free because of disability rates here) and someone commented to me "I'm going to get a disability rate so I can get on the bus for free because if you can, I can. You're not disabled." As you can probably already tell, I set him straight. TAKEAWAY My main message is if you have an invisible disability, YOU ARE NOT ALONE. AS well, for you abled-bodied people, PLEASE don't assuem that you know what someone is going through and don't fake a disability. Thanks :)

Born with Limb Differences I was born with congenital limb deformities. In layman’s terms, this means I was born without both fibulas (calf bones) and missing digits on both hands. I also have one leg a few inches longer than the other, because one thighbone is longer than the other. (In case you’re wondering, it’s my left that’s longer). I’m told that my granddad took one look at me and said to my mother; “He’s still beautiful though.” I spent the next 20 months or so as any other ‘normal’ baby. You know the sort of thing, crying, pooping, eating. All the fun stuff. In addition to this, I had cosmetic surgery on both hands for functional reasons. I still managed to walk with specially adapted shoes and calipers though and achieved this by 18 months old. Syme's amputation The next event of major significance was in December 1985, when I moved with my family from Bristol in Somerset to Crowborough, in East Sussex. Part of this move found me being referred to Great Ormond Street Hospital, where a top pediatric orthopedic surgeon recommended that the only real option was an amputation. The only alternative would have been me spending the rest of my life in a wheelchair. The decision was made to amputate. This must have been one of the most difficult decisions for my parents to make. Both being only 23 years old at the time, I don’t know how they did it. My younger sister was only 3 months old when they had to make this life-changing choice on my behalf, but I have never held it against them and never will. I had a double below knee Syme's amputation at the age of 2 and a half. This means they amputated through my ankles and wrapped the padding of my feet around the end of the bone. This gives extra padding to the end of the bone. From talking to other amputees throughout my life, I’ve been told this is a good thing to have. Excelling after my amputation After speaking to my mother recently she tells me I was up and walking around on my prostheses within 6 weeks of amputation. I never have liked sitting still. I even have a video of me in the hospital kicking a ball, only five days after having the limbs fitted. My sister, who was 9 months old by then, was learning to walk at the same time. She seemed confused that she didn’t have to put on a pair of legs to stand up and walk. “I suppose the next significant part of my life would be playgroup. Here I met Tim and Martin who would turn out to be my best friends and still are to this day. From memory my favorite time at playgroup involved ‘Bikes’. If you’ve ever been to watch banger racing, imagine that but with 20 or so 2-year-old boys on trikes in a church hall. There was never any question of my ability to scoot around on a trike, I just did it. In fact, from an early age, I don’t ever remember my legs causing me any problems “disabling” me, or preventing me from doing anything that I’ve ever wanted to do. The owner of my local gym recently said to me “You’re the most least disabled person I know” Now he’s not one for words but I kind of got the idea of what he was trying to say. In September 1988 I started primary school. I was all dressed up in my blazer, shorts, and cap. I looked adorable! More Surgery My two best friends were also with me at the top of the school drive when we waved goodbye to our mums and disappeared into Reception class, a mix of learning, playing and meeting lots of new people. And there was one boy who won’t ever forget his first meeting with me. Whilst playing on the climbing frame he asked what had happened to my legs. Now I have no idea why I told him this or where the idea even came from; I told him that I had lost them in the war! He was (unsurprisingly) amazed by this and went straight home to tell his mum. I think she was equally amazed and, after speaking to my mum, was reassured that her son wasn’t in fact at school with a juvenile war hero. There are many opportunities for amusing situations when you have prosthetics; ranging from the time a boy attempted to pull me out of a tree by grabbing my feet, the result of which was to leave me up a tree, laughing at the stricken face of a small boy holding a pair of legs; to me being chosen for the hugely important year 4 vs year 6 football match. This happened every year and I was surprised to be picked for the team. However, I think I gave everyone a shock when I kicked the ball towards the goal and my leg followed. Luckily the ball and my leg both landed in the back of the net. If I remember correctly this game ended with a year 4 victory, this was very rare. Throughout my primary school career, I had lots of legs. As I’m sure you know children grow and at times I was having a new pair of legs every 3-6 months. At the age of seven, I found myself having further major surgery to my hips and thigh to make the fitting of my prosthetic limbs easier. This was a particular blow as I was unable to walk for several months and was in plaster from the waist down. However, I was bought a Commodore 64 computer and this seemed to ease the pain somewhat. By the age of 10 basketball was my life. Chicago Bulls were the team and Michael Jordan was my idol. I loved basketball so much that I even slept with my basketball sometimes. I also joined the cub scouts at this stage of my life, yet again more new people and more questions. This time however my Akela, (cub scout leader) who was also a massive basketball fan, informed the whole pack that I was to be treated no differently than anyone else. Here I met another friend who was also a Chicago Bulls fan and who, handily, lived just down the road. We spent so much time playing basketball together and if I do say so myself, we were pretty good. September 1995- Secondary school. Again I was joined by my other two musketeers (Martin and Tim). Now when people first meet me they immediately notice my hands, they are usually shocked when I tell them I have two false legs as well. Secondary school for me involved minimal learning and the maximum amount of sports. Mainly basketball of course but I also did everything else. My parents raised me in such a way that they let me try everything (and I did). There is no such thing as "I Can't" Whilst writing this I spoke to my mum a lot and she told me a story about something that happened at the local park when I was about 3 years old. Mum and my Nan took me to Wolfe Recreation Ground and like every other child, I wanted to go on the slide. There were two slides, one small and one big. Guess which one I went for? Now my Nan was always worrying about me. She turned to my mum as soon as I started to climb the ladders to the big slide and said ‘You can’t let him climb them’. My mum's response was ‘I have to let him try’. My parents have always encouraged me to try anything and everything and not let my ‘disability’ stop me. Being raised this way has turned me into the person I am today, I never let anything stop me from doing things, yes there are certain things I have to do differently but I will always find a way to do the things I want to. In my 30 years, I’ve never come across anything that I haven’t been able to do. For those of you who say “I can't” when you come across something a little bit difficult, my response to you would be; If you want it badly enough you will find a way. Go on give it a go, you won't know until you try. Memorable Acievements Dale asked me to provide a list of my “achievements” as he put it. To me, they are just my life. These are only the ones I remember, there’s probably a lot more: Learned to walk. Twice. Run Play football Swimming (Representing England internationally) Basketball Ice/roller skating Tennis Skateboarding Waterskiing Jet bikes/skis Bowling Piloted a glider Go-karting Skydiving Golf Driving Badminton Rock climbing Abseiling Skiing Canoeing Zip-lining Most theme park rides (Even the ones where you dangle your legs)

Having a Limb Difference & Loving It Hey there! My name is Pia and I was born with a tiny right hand. Growing up, it wasn’t exactly easy for me to accept my limb difference. Kids can be pretty terrible after all, especially when they’re from a small German village that hasn’t seen too much diversity. Luckily, I have amazing parents who’ve always empowered me and encouraged me to pursue my dreams regardless of what others might say. So playing the guitar, climbing, boxing, etc. was no big deal at all. I just might have needed to be a little more creative. I can say with great pride that I’ve never seen my hand as a disability or handicap (it still bothers me when someone refers to it as such), but rather as a challenge and an opportunity for creativity and thinking outside the box. Tying shoelaces, putting my hair in a ponytail, driving a manual car, playing the guitar...are all totally doable with a hand and a half. Just Put a Face on It From early on, I’ve seen my hand more like a doll than anything else, dressing it up with my Barbies’ accessories and painting faces on it (let’s be honest- the mini thumb just looks too much like a nose). For a few months now, I’ve gotten back into dressing up my hand. This time I use my phone. I love inventing new personas, or using random objects as hats and letting my imagination run free. After all, it’s pretty cool to be able to do something that most other people can’t, because drawing faces on a normal hand..? Come on, that’s lame. And more than that, I’ve decided to actually do something with it, and upload the pictures to Instagram where I’ve discovered an amazing community of people with limb differences that are so inspiring. I really hope to reach others like me who are possibly struggling with accepting themselves and show them that it’s really not a big deal. And that it can help a lot to laugh about yourself every once in a while.

My life My name is Marin Giljanović. I'm 25 years old. I'm from Pula, Croatia. Since birth, I have been using a wheelchair because I was born with Spina Bifida. This has not prevented me from being active in life. Since I've been 15 years old, I've been playing sports. I have over 10 medals won. In 2011, I became the Champion of Croatia. I raced 100 meters. After that competition, it took about 6 years for me to complete school. Now, I have a diploma to be a web designer. Meanwhile, I graduated from Elementary Music School. I played the violin and flute. When I finished my education, I started dealing with humanitarian work in various humanitarian organizations. I like helping people. Although I am a person with disabilities, others are always in first place. I said earlier that I took a break 6 years from the sport, but after 2 years I was invited by the former club and became a member of the Presidency of the club. I am also active in the Society of people with physical disabilities in my city, also as a member of the Presidency. After 6 years of active sports, I returned to the athletics and I was invited to be a basketball player in one club in my county. Although I am now actively and professionally active in sports, I have not forgotten others. I'm still engaged in humanitarian work in my free time.

How I Became Paralyzed In a freak accident on March 29, 2017, I fell 40 feet; breaking the L1 vertebrae and the ulna and radius bones in my arm. Luckily, I don't remember the fall or much of what happened after. It all kind of felt like one of those surreal dreams where you wake up and think, 'Oh, thank God it wasn't real'. Except, I woke up and it was real. Laying there not being able to move my legs felt so strange! I was heartbroken at the thought that I would never be able to continue the sport I love: rock climbing. Climbing is who I am! It's my passion, my hobby, and my job as a rock climbing coach. The task of re-learning to walk hadn't even crossed my mind yet... I was so excited to return to climbing, regardless of how ugly it might be. Climbing to the top I was so scared that my 8 years of training had been in vain. I went to Nationals with no expectations, just wanting to experience everything that the opportunity had to offer, and I actually squeaked by and landed the 3rd US Team spot for my category. This opened up a huge door for me and I was able to travel internationally for the first time in my life! I represented my county on the World Championship stage just 5 months back into climbing. I fully believe that rock climbing was one, if not the biggest factor in my recovery. The intimate relationship I had with falling and failing from climbing had taught me that everything was going to be hard for sure, but achievable with enough effort.

MY UNIQUE SON JACK From a little girl I loved playing babies with my dolls and it all seemed so simple and easy in my childlike mind. I thought that the way it would be but by the time my first child Jack was born I soon realized life was never going to be that easy. Although Jack had delicate features like a doll thats where the similarity ended. When Jack became a toddler, it became more than apparent to me and my husband Paul that Jack wasn't taking the same path as we saw our friend's children take. I didn't hear them crying out in torture when you knocked over their toys, but Jack would take hours to calm down if I just knocked one of his perfectly lined color coded cars out of place. Just to leave the house became the ultimate challenge as he would frantically look for trinkets to stuff in his pockets. I lost count how many appointment it made us late for. Every daily event created its' own personal battles to complete, days out, education even just to get to school was full of rituals and routines such as shutting people's gates. I cursed those forgetful people under my breath for having to constantly pull him away before he set car alarms off out of desperation to touch their badges. Not such an easy task when you're pregnant carrying twins. ALONG CAME THE TWINS Eventually answers came in the form of a High Functioning Autism diagnosis and so did my twin girls, Shannon and Stacey. One sibling would of been enough for my lad to get used to but two sisters was a total adjustment. It certainly put any routine established out of sync completely. The diagnosis was a blessing even if some would class it as a label, it certainly helped me get more support and recognition that my lad wasn't an out of control brat, but a child struggling to make sense of the world around him. We looked at this as a small part of Jack but not all of him was so much more unique and perfect in his own way. Like any parents dealing with a child with additional needs, it felt like sailing a ship on stormy seas some waves came and you cling on and hope to stay afloat while others totally brought you crashing down. It certainly felt like that when the oldest twin (by seven minutes) Shannon, ended up with two diagnosis at such a young age because she was crushed in the womb. It was discovered that she had Mild Spastic Diplegia Cerebral Palsy in her feet, but special shoes certainly helped her deal with that. After six months, she started to deteriorate drastically in her first year of primary school. Many symptoms like flu, exhaustion, severe sickness, headaches, fevers- you name it, seemed to develop to our horror. Our lives were filled with hospital visits, countless tests & MRI's as we searched for desperate answers. Those answers didn't come for years. I felt like I was just banging my head on a wall trying to get listened to and prove how sick she was when the test revealed nothing. The idea of the perfect mum had worn off so much through my journey with my children although I felt a lot of guilt. What did I do wrong? Why my children? Have I failed them? It all circled my mind to taunt me. Finally Shannon was diagnosed with M.E. Myalgic Encephalomyelitis. I thought we could get all the help needed now, but after being told apart from pacing this illness is so mysterious with no known cause and cure . We were literally on our own knowing that any energy used in her body would drain quickly and result in her having all those symptoms back again, which resulted in a relapse. Daily life was a battle and education was becoming impossible. With her twin sister, Stacey, terrified what was happening to her twin and Jack struggling with the world around him. Family life felt very bleak indeed as the light at the end of the tunnel seemed in the distant. KEEPING SANE We battled with two children with two totally different diagnosis and one child who felt like she was the odd one out because she didn't have any special needs. Our situation presented so many issues in our daily life. One child needed peace and serenity to stay well while the other was also needing to be active and loud because his brain couldn't slow down. I needed to find my own sanity among all this so I could turn something positive of all the negativity we have been through. I created a group on social media called "Campaign For Disability Awareness." It was a site where I could raise awareness and help others who may be on a similar journey to me. The site grew in many ways and resulted in me attending events and running workshops to educate people on disability awareness, especially relying on my own personal experiences with my children. I wanted to raise awareness in a unique way to help people create memories and have fun while learning the best way to achieve this. In the workshops people would take part in cognitive and physical challenges while using a variety of disability aids, visual impairment glasses, hand & arm adaptions, neck braces, etc. All this helped give insight into disabilities. The activities were child like games & sports. Adults as well as children enjoyed the experience but felt empathy too. It was a winning formula and I had been lucky to work with so many incredible organizations along the way. NOT PLAIN SAILING I think I've finally reached a place where I'm fully aware that nothing is going to go smoothly no matter how much I wish for an easy life that is not the path my family is on. It's more important to concentrate on the good days or the days we will think of special memories to help us get through the bad days. Enjoy the moment because no matter how small it may seem it's the little things in life that counts more then the times sitting indoors watching my daughter weakening everyday feeling so helpless and alone . None of the big things matters. All that matters was being able to sit outside in the sun and take her to school. All the things others can take for granted were becoming fading dreams to us. Looking back at bringing up the children, could I have tried harder to be the perfect mum, whoever she is? Should I have pushed more for perfection? I believe no. It would of just made my life unbearable striving for something that was out of reach while valuable time and memories would have been lost. Memories of pretending to stomp along the street to stop my son feeling anxious, silly dances and voices to take my daughter's mind off her pain. To me I achieved my level of perfect mum because it got us through our journey.

I don't remember my life without Cerebral Palsy I'm Rina, I'm 24 & I live in Ukraine. I study, work, believe in God (this is probably the most important thing about me), speak three languages fluently (Russian, Ukrainian, English) and I'm learning three more (French, German, Italian ). I also write poems and play the guitar. I was diagnosed with Cerebral Palsy when I was 16 months old and I don't remember my life without it. But still, it is MY life and I try my best to take as much as I can from it. The root of the word 'disabled' is 'able' anyway. I'm telling you this as a person who is one month away from the master's degree of English philology and as a person who knows that a disability can make life a little bit harder, but it should never be an obstacle on the way to your dreams. live YOUR life & enjoy everything God has given you As I said at the beginning, I believe in God. And I know that He believes in me. God makes no mistakes, and if He created me like this, then I should appreciate all His gifts! I want to tell all my fellow Cerebral Palsy warriors and people who are living with other disabilities that they are all loved & they are special and amazing in the eyes of God. Regardless of all our troubles, there are still so many things we are able to do! We appreciate life, we take nothing for granted because what is a part of our daily routine for the rest of the world is a great win for people like us. We know that miracles happen and we are grateful for them! We can inspire so many people just by being the way we are! So many people can bring us down and tell us what we cannot do, but we can rise up over and over again and show them what we CAN do! Our bodies may be weak, but we often don't even realize how much strength we have in our hearts! Each of us can be a little lighter to light up the room when they come in! Maybe our lives are not perfect, but whose are? Is there at least one person who could say 'I live a perfect life'? It's very unlikely because perfection is relative. What is perfect for one is completely unacceptable for another. So why not live YOUR life & enjoy everything God has given us? Disabilities are what we have, but only a tiny part of who we really are. They don't define or stop us! We have just one life, so let's live it up!

My Paraplegia Story My name is Barbie I’m 26 years old living in England. (From Hungary originally). I had a car accident in 2016, which left me paralyzed from the waist down. I’ve regained some movement and feelings back luckily, but I have been using a wheelchair since my car crash day. I still live a happy and full life. 😉😊

Tiny Warrior with Cerebral Palsy From The Start My name is Briella Naif and I’m a sweet, darling, happy 4-year-old girl. I was born 6 weeks premature weighing only 3lbs 11oz and spent 24 days in the NICU. Two years ago, I was diagnosed with Spastic Diplegic Cerebral Palsy (CP) which effects all four of my limbs, but this diagnosis doesn't stop me from enjoying life to the fullest. My infectious smile and personality lights up the world with anyone who meets me. I am non-verbal but a very social girl who loves school, books, and all things girlie girl. I go to multiple different therapies each week such as: Speech, Physical and Occupational therapy. Currently, I use a walker and wear AFO’s (foot braces) every day, which assist me with everyday aspects of life. This year I underwent a life changing surgery to give me the ability to one day take my very FIRST INDEPENDENT STEP!! Cerebral Palsy won't stop me!! Selective Dorsal Rhizotomy Surgery CHANGES LIVES On June 22, 2018 I underwent a LIFE CHANGING surgery called Selective Dorsal Rhizotomy (SDR) at Mott Children's University of Michigan Hospital to help get rid of the spasticity in my body caused by Cerebral Palsy. “Spastic" is high muscle tone and tightness in my muscles which is very painful and worsens with aging especially through growth spurts. This major back surgery will help my bones and muscles grow and develop properly, which will give me a greater chance of INDEPENDENT WALKING. Without this surgery I may be bound to a wheelchair later in life and may not have any independence as the spasticity will cause pain and tightness. For the surgery to be a success, I will need intensive physical therapy every day in office 3-5 times a week for a YEAR after the surgery to be able to learn to walk again and build strength throughout my entire body. However, insurance only covers 34 PT/OT visits for the year and I will max out of these visits. For an hour of pediatric PT it costs $150+ out of pocket once we max out. Physical therapy is crucial for me after SDR surgery for the surgery to become a success, so I can one day take my first independent steps. I will require well-over 200 PT visits within the first year after SDR surgery. Selective Dorsal Rhizotomy Surgery Update I am 4 months post op from SDR surgery and already this surgery has given me great results. It’s like someone finally turned on my light switch. I am so close to taking my very first independent step and my speech is also starting to improve. Currently I am learning to walk and talk and through hard work at home, in school and in therapy. I know I will make great strides this year and for years to come. Nothing will stop me from working hard because I am capABLE of changing the way people view others with challenges and special needs. I am sharing my amazing Cerebral Palsy journey with the world to inspire kindness, acceptance and inclusion for all and to give hope to others who live with CP and other challenges. Please stop by and say "HI" and don’t forget to give someone a "Briella" smile today. 😊 I am so blessed with all the great support we have had these last 4 months. I continue to amaze everyone around me! HOW YOU CAN HELP 1. Share & Follow Briella's Story Facebook+ Instagram Instagram @briellaandme Facebook: Briella+Me 2. Donate here GoFundMe- briellas-wish-to-walk https://www.gofundme.com/briellas-wish-to-walk THANK YOU for taking the time to read Briella's story. We greatly appreciate your donations to help our daughter kick Cerebral Palsy in the butt!! God Bless you!! We hope to raise awarness of Prematurity and Cerebral Palsy with the world by sharing Briella's story to inspire others, and send a little cheer along the way. Love, Matt, Caroline and Briella Naif NEVER GIVE UP!!!!!