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Dear Doctor Dear Doctor, You may not remember me or my daughter but I will never forget you, but I forgive you. You were the one who told me all the things she wouldn’t do; but you never told me the things she could. You were the one that told me my daughter couldn’t nurse because of her low tone and because of her Heart Defect, but what you don’t know is that she exclusively breastfeed for 4 solid months. I even had to bring her to work with me because she didn’t want anything else. You were the one that diagnosed her with Failure to Thrive and expressed your concerns of her gaining weight, but what you don’t know is that she is now one of the Bigger Babies in our birth class and in 2 weeks is turning One. You were the one who made the decision to give her an NG tube because of your concerns and her weight gain causing a Horrible Oral Aversion to the point that she couldn’t even put her own hands in her mouth, but what you don’t know is that we overcome that and she eats everything now by mouth including being able to feed herself. You were the one that made me feel I wasn’t good enough to handle a Special Needs Baby being a mother of 5, but what you didn’t know is that she was put here for OUR special needs. You were the one that delivered my daughters diagnosis. You were the one that patted me on the shoulder and told me you were “Sorry!” Sorry that my daughter was Diagnosed with T21, but what you didn’t tell me was that her Diagnosis and our story would save lives. You were the one that saw her as a diagnosis and all we saw was our new precious daughter. Not once did you congratulate me on my new born. So I forgive you. I forgive you because you didn’t know her. You didn’t know me and you didn’t know what We were capable of. And Thank You! Thank you for lighting a fire in me that I didn’t even know existed....

do not hide My name is Anna, I'm 27 and I'm from Rome. I was born without my hand and the left forearm due to a drug my mother took during her pregnancy. I had to face adversity from birth, discovering immediately what I could and could not do. I fought against people's judgments, I've fallen many times but I've always gotten up. Until 2017, the state has never recognized my rights. I participated in the selections of Miss Italy 2014 wth a prothesis. I was wearing a prosthesis, which only hurt me because it was heavy, it caused me a lot of back problems until I realized that I did not need it because I was born like that, for me it's normal like that, I do not have to be afraid of hiding myself, each of us is unique as it is.I participated in the selections of Miss Italia 2018 without prosthesis without fear or shame. I learned to be enough, to love me, to be independent and at peace with my body. Today I am a motivational coach for parents with children born with limb differences. I help parents understand that they do not need to pass their trauma to their children who do not actually live in it. We were born like this, life has been like this, and so we must show ourselves to the world without fear. Let's love each other, always.

“You are who you are” The older I get the more I understand that no one can stop you but YOU! You're in control of your destiny. Not anyone else. Often times people make excuses as to why they can’t do things, but that’s the easy way out. It’s much harder to actually DO what you say you’re gonna do. Or get started on that dream that you've had since you were a child. If you really want something, you’re not going to let something like a disability stop you. At the end of the day, the person that you were before you were disabled, at the core you’re still the same person. If you like to dress nice and keep yourself up, then that’s what you’re going to do. If you want to be a bum, then that what you’re gonna be. And if you want to be CEO of your own company, then that’s exactly what you’re gonna do. You’re not going to let something like a disability stop you from living out your truth. The same goes for those born with a disability. What’s in your heart is in your heart. It’s already yours. So go out there and get what’s yours. Peace and Love to everyone ❤️✌🏾

Diversity and Inclusion in the fashion industry It is no secret that beauty rules the roost in the colourful world of fashion and glamour, but several renowned global fashion designers are now slowly but steadily bringing fresh perspective to this sphere by focusing on inclusive fashion - showcasing collections of adaptive clothing, largely for the differently challenged people. For the first time in Sri Lanka Rex Fernando and I collaboraed with Sri Lankan counterparts to present a revolutionary fashion show where differently-abled models walked & wheeled down the ramp together with the abled models. The fashion show featured a number of designers from India, Dubai, France, Sri Lanka & the USA. There were participating models from France, Angola, South Africa, Finlande, Belarussia, Greece, Sri Lanka and Ukraine. I want to challenge the traditional rules of Asian European Fasion Week! Stay tuned for more of my work!

The first lesson The first lesson is special-needs parenting is the hardest. Breaking the news to siblings who can understand. I'm not sure there's a single right-way but there are definitey many acceptable ones. When my son was diagnosed he was only 6 months old, his sisters were 3 and 8 (twins). It's a little hard to explain that he has a brain malformation. Instead, we let them all grow up together with not a word. We'd give cautious warning about foods, or to be gentle with him when playing. As time went on the older girls realized there was something different, he wasn't crawling or talking and couldn't eat. The younger one didn't know, she had nothing to compare him to. By his 2nd birthday, my twins, Alie and Brook, knew something bigger was at play. They were 10 and old enough to give them a brief explanation. So I did; I sat down and we talked about how God creates us all differently for a purpose and that no matter what, we are all beautiful and wonderful. I let them know that Hank was going to be different, he would not be able to learn a lot of things the regular way and that he would need a lot of help to do things. He won't be abe to use words but if we pay attention, he can talk to us. This was okay, it gave them the answers they needed to calm their worries. Emma, now 5, remains oblivious to anything. She's always referred to him as a baby, which suits her age appropriately. She has also not been aware of the abilities of many other 2-3 year olds so she has no comparison. As of late she is noticing some things, speech and walking mainly. The time came to have the truthful discussion. There was some confusion for them, how did it happen and what will happen now. Will Hank grow up and learn things like them, will Hank be okay, how will Hank go to school. So many questions from their little minds. I owed them honesty and I watched their face comprehend. Then process. Then accept. And move on. For Better or Worse The only thing better than a parent advocate is a sibling advocate. These three girls have taken it all in stride. Emma attended 3-5 therapy appointments a week for 3 years. She accompanied Hank to more than her share of doctors appointments and hospital visits. By his side the whole way, she was his own private cheering section. She was an educator, making sure anyone new to him was aware that he was special. She told people he can't hear on that side, or that they need to be near his face, or that he can't have real food. She would hold his hand and sing when things were tough. She prays for him. There were moments when I was sure my heart would break from watching her carry his burden. Alie and Brook share his story with everyone. All of their teachers know about him and are up to date on how he is doing. They work with him at home and have given him an amazing quality of life. They include him wherever our road takes us; zoos, museums, aquariums, hiking, the park, and anywhere else. They bring him things to see and feel, they point out what can't be brought to him. They want nothing more than to see him smile and laugh at life. I wonder how I came to be so blessed some times. Hank gave me so much and these super hero siblings have given back to him. We're all in for the whole ride, better or worse and all in between. *(Main Image Professional photo credits to Whigham Photography)*

10 ways you can (easily) connect with fellow warriors Whether you are newly diagnosed or have had a diagnosis of epilepsy for a long time, connecting with others with epilepsy can be challenging, due to many factors… I'm going to share 10 ways you can (easily) connect with fellow warriors. #1: Share Your Story I know it can be scary, but sharing your story educates people about epilepsy and gives insight to what it’s like to live with the disorder. Sharing your story also empowers others to share… When we share our stories, we help end the stigmas surrounding epilepsy by not hiding behind our disorder. #2: Community Events Non-epilepsy related events are just as important as epilepsy related events! I’ll give you an example that happened to me recently… My husband and I took our pup to an event for dogs at a local dog park/restaurant. The business is pretty neat… They have a nice fenced in dog park, and seating outside the dog park for humans to eat, drink, and hang out. As we were sitting with our pup, eating, and taking it all in, the lady beside me commented on our eating habits. You see, my husband is a vegetarian and I am on the Ketogenic Diet to control my seizures. Our order consisted of Bacon (for me) and a vegetarian sandwich for him. I was putting nut butter on the bacon and eating it, as Brek ate his veggie sandwich. We all laughed at the contrast in diet preference, and I shared with her why I eat the way I do. Turns out her daughter, sitting across from her at the table, has epilepsy. We talked about not having proper support, feeling isolated, and I shared my story with them. You never know where you will meet someone that understands what you are going through, whether they have epilepsy or not. #3: Warrior Hangouts This might possibly be the easiest way to connect with other warriors… It takes the focus off of you and puts it on us as a community. Beginning September 20th, Life Elektrik will be hosting virtual hangouts via Instagram live. We will host two per month: 1 for US residents & 1 for UK residents. Our Canadian friends are welcome to join the US Warrior Hangout, but everyone is welcome to join either hangout no matter your location. When we go live for the US Warrior Hangout, we will be chatting with US based warriors. When we go live for the UK Warrior Hangout – You guessed it! – we’ll be chatting with UK based warriors. Join us for our first month of Warrior Hangouts, and check out the details here: https://bit.ly/2NEXz3B #4: Social Media Comments We all have those accounts that speak to us. They share their stories, struggles, and triumphs… We follow them, because we feel inspired, motivated or can simply relate to their content. Go ahead, leave them a comment. Tell them why you feel a connection with them and little bit about your story. If they are authentic, they will respond authentically. There are so many accounts that focus on epilepsy, self-care, health, and living your best life with or with a chronic illness/disorder. #5: Direct Message A Fellow Warrior Have you ever chatted with a fellow warrior? It’s really refreshing to talk to someone that understands the daily struggles of living with epilepsy. We may have different types of epilepsy and different causes for seizures, but we are all fighting to live as “normal” of a life as we can. Talking to someone that understands what it feels like to have a seizure and deal with the social aspects of the disorder can help to make you feel like you aren’t some type of weirdo and understand that other people do have some of the same challenges and experiences as you. No matter how you reach out: Instagram, Facebook, Snapchat, Email, etc. just know that your message is probably just as helpful and supportive to the person you are messaging as it is to you! #6: Facebook Groups I have a love/hate relationship with Facebook – especially their groups. These can be extremely beneficial for people that feel they are lacking support; however, they can also be a place of ignorance. When choosing a Facebook group to be a part of, ensure you are joining a group that has a philosophy of positivity. There are TONS of groups for epilepsy, chronic illness, and disorder support. If you aren’t sure where to start, be sure to check out our Life Elektrik groups on Facebook: Life Elektrik Warriors (Worldwide Group for All Warriors) https://www.facebook.com/groups/LifeElektrikWarriors Life Elektrik Dothan (Dothan, Alabama, US Warrior Meetup Group) https://www.facebook.com/groups/LifeElektrikDothan/ Life Elektrik Austin (Austin, Texas, US Warrior Meetup Group) https://www.facebook.com/groups/LifeElektrikATX/ Life Elektrik London (London, England, UK Warrior Meetup Group) https://www.facebook.com/groups/169555840393038/ #7: Warrior Meetups Warrior Meetups are a great way to connect with your local epilepsy community. Life Elektrik currently offers Warrior Meetups in three locations: Austin, Texas (US) Dothan, Alabama (US) & London, England (UK). You can find added support by joining on of our Facebook groups – listed under #6. Each month, the local ambassador plans a fun event or activity for warriors to attend. In the past, we’ve done things like: Meet at coffee shops, roller skating, 5K walk/run, and we have tons of fun planned for the remainder of the year and 2019! Visit our Events page for more info. Austin Ambassador: Christalle Bodiford (Instagram: @ChristalleBodiford) Dothan Ambassador: Dawn Hicks (Instagram: @HickstersLife) London Ambassador: Nathan Harvey (Instagram: @NathTheDad) #8: Seminars & Workshops I know what you’re thinking… “BOOOOOORING,” right? But really, what could be more exciting than learning more about epilepsy and how it relates to our bodies!? Not to mention, when you attend epilepsy related seminars, workshops, conferences, etc. everyone there has the same purpose… To learn more about epilepsy. I don’t think you’ll find a more inviting community than the one you’re already a part of! 😉 Get your notebook and #2 pencils ready, takes notes, share your newly obtained knowledge with your community, all while making new connections in the process! #9: Coworkers as Allies Much like sharing your story, telling coworkers you have epilepsy can be scary. It can also be an opportunity to educate and gain security… How? By sharing you have epilepsy with trusted coworkers, you can ensure your safety in the workplace. I’m very open about having epilepsy, but you don’t always have to be… Just pick 1 or 2 (in case one is absent) coworkers that you work closely with and trust, tell them you have epilepsy, and explain to them what to do if you have a seizure at work. always keep your I.C.E. info and seizure first aid card at your desk or on you, in case a seizure occurs. #10: Online Communities Much like Facebook groups, there are many online communities that are specifically for people living with epilepsy. When I was first diagnosed and looking to connect with others, I used to participate in the Epilepsy Foundation’s web based chat rooms and message boards. They also helped me to better understand that I wasn’t alone in the feelings and experiences I had. There are so many options today to choose from… If you aren’t having luck in other areas of connecting, be sure to check out websites like YOOCAN for additional support! (They are one of my personal favorites.)

Birth Story After I got pregnant, I envisioned my little baby for a million times, she would be a beautiful mix baby, healthy, and smart. My labor was short, three hours natural labor without any medical needs. The whole day I felt dizzy and happy at the same time. Holding my baby in my arms felt surreal. My life changed suddenly on the third day. During Iris’s pediatric visit, her bilirubin was high and we were told to go to the NICU immediately. The pediatrician also asked if we did genetic testing. At that time, I didn’t know what it meant. I asked my husband, he told me not to worry about it. We drove to the hospital and handed our precious baby to the doctors and nurses. They put all the tubes on her, I cried. Iris was screaming, mom could not do anything to help her. Later in the hospital, while watching her under the blue light, the nurse practitioner asked us again for taking her blood and doing the genetic testing. He started to tell us Iris's physical features indicate she has Down Syndrome; low nose bridge, almond shaped eyes, low muscle tone and etc. I was trembling and weeping after receiving this news. My husband held me tightly and reassured me that Iris was just fine. They took her blood the next day and sent to the genetic testing company. About a week later, they told us that they didn’t draw enough blood. We decided not to do the blood draw right away, since her hands were bruised from all the needles at the hospital. However, I worried even more. I could not focus on my newborn. Iris always looked at me helplessly with her big eyes, and she seemed to know everything. After Iris turned two months, we decided to draw the blood again, after the genetic test came back positive, I felt all my happiness of being a mom had been drained away and my life was over. In my eyes, she was no longer my baby girl, but a diagnosis. I started my self-pity party, why did this happen to me? Why did it have to be my daughter? My husband and I are young and healthy and Down Syndrome had never crossed our minds. All I thought about was how much trouble she was going to bring us and how others will react when I told them my newborn has Down Syndrome. Transition I did not dwell in sadness for too long. My maternal instinct let me accept my daughter for who she is. As I hold her in my arms, her little squishy pumpkin face lies on my chest and her hands hold me tightly, as if she does not want me to leave. I wish time could stop and I could protect her forever. Gradually, I found out that she was just the baby of my imaginations. Iris’ eyes take after her father, shining dark buffalo eyes, and I wonder about all the stories in those eyes. Her little button nose, straight hair that stands against gravity, and a small cherry mouth. I can stare at her cute face all day; she likes to suck her little tongue while sleeping. She likes to hold her arms up and wants to be held all the time. She kicks her legs, lifts her head and shoulders up high. She exercises so hard to achieve her milestones. I feel she is getting stronger and prettier everyday. In the most difficult times of my life, I have my loving family. My husband is always there for me and he is the strongest man to console me thousands of times a day. I know it is also hard for him to acknowledge that his first daughter has Trisomy 21. One night, he cried in front of me. It was the first time I saw him cry this hard since we have been together. He asked me what he could do to make me feel better and felt that there was nothing. He said I was unfair to our baby, which reminded me that I have to be strong for her since I am a mom now. My parents play a significant part in our journey. I know in my parents’ heart, she is no different than a typical baby. Iris is just perfect. They love to watch her, play with her, and celebrate every little achievement. My in laws also love her like none other. Their eyes light up when they see Iris. Iris is the first grandkid on both sides of the family. I used to think of myself as a failure because of her extra chromosome. I keep reminding myself to get out of my sadness and try my best to be a good mom with unconditional love. Making connections with other special needs mothers in town and through social media is another way to walk away from sadness. We can be friends through our shared experiences. They understand me, because at one point in their lives, they felt the same as me. We share the same grief, hopelessness, and regret. When they talk about their kids, they are proud and I see joy on their faces. These kids bring much happiness to their families, rather than trouble and embarrassment. They assured me everything would be fine and my baby is going to have her own life. In their stories, the kids with extra chromosome are loving, full of personalities, love hugs, have their talents, and need recognition from others. Chatting with them, I feel proud to be part of this special needs mothers’ community. I also feel that if others can raise a special needs kid, why can’t I? I can be just as strong as other mothers. Words to Other Parents Acknowledging that my newborn has extra chromosome 21 is the hardest thing I have ever experienced in my life and looking into the future is even harder. Every now and then, I am still falling into the same trap and wish the extra chromosome could disappear. However, I know it is the extra little things that make Iris who she is. I have changed quiet lot during these short months. I am no longer the spoiled little girl, but a strong woman. To be honest, I have never been an advocate in my life until the birth of my daughter. The birth of Iris gave me a mission in life. I want to share my journey with new parents who have a “little extra” in their lives. It is okay to be sad, but do not stay there too long. Lots of things happened not as plan, but maybe there is actually no plan in life. We have to experience life as it comes, and to the fullest. To be a mother, I am shocked by my own ability. I know my journey just began and there are many challenges waiting for me. One will never know how strong one can be and with the power of love one can certainly do anything.

Advocacy opportunities are endless! When I was 19 years old I was the victim of an armed robbery and was shot in the back. I have had a T10 complete spinal cord injury for the last 31 years. I finished college and a Masters in Social Work. I also worked in Physical Rehabilitation Hospitals for 20 years. I raised 3 kids that are now 24, 21 and 18 years old. I have worked for Numotion for 3 years in sales. I love advocacy and try to do it on a local level and a national level as much as possible. I was Ms. Wheelchair Louisiana over the last year and that has given me even more opportunity to talk about issues that impact people with disabilities. On August 4th, 2018 I won Ms. Wheelchair America 2019, and I am honored and thrilled! My platform is to increase access to technology that helps keep people with disabilities healthy! My website will be live in a week, www.MsKarenRoy.com. Please follow my advocacy journey this year!

Spinal Cord Injury In 2016 I had just finished my first year of medical school. I decided to spend my summer traveling with my good friends. First stop was Haiti for a public health “class” to learn about maternal-fetal health. Our two week trip was cut short— on the fourth day my friend and I were involved in an armed robbery. The masked man, for reasons I don’t dwell on, shot me twice: once in the chest and once in the hand. The bullet from my chest entered my spinal canal and instantly paralyzed me from the waist down. In that moment, as I awaited what I thought was certain death, my entire life changed. I was no longer just a student of medicine hoping to one day help my patients— I was the patient. Lesson from my Spinal Cord Injury In medical school, we learn the inner working of the human body. We spend hours memorizing the minute details of pathology. We build empathy through numerous clinical interactions. By the end of our training we think we understand what it means to be sick and how to fix it. But all that changes when you experience chronic illness. When you become the patient, you realize how little your training means when dealing with a human life. We will all become ill one day. The majority of us will gain a disability. And inevitability, we will all die. Living with my L1/L2 spinal cord injury has taught me that I don’t need a doctor to “fix” me, I want a doctor that truly empathizes with me and my condition. One that sees me as a human being and provides empathy, support, and compassion so I can live the best life in this new body, this second chance, I’ve been given. Learning to Love The past two years have been filled with failures, triumphs, depression, joy, lots of crying, and immeasurable laughter, learning, and obstacles. The obstacles have made me a stronger person. I’ve found that the love I have for myself and others around me has grown immensely. I’ve given up hurtful habits, such as binge drinking, and found healthier coping mechanisms for my mental health. In the summer of 2017, I decided to return to medical school while using a mobility aid— my trusty walker. I’ve learned to let go of control and pride—I often rely on the help and compassion of others. While I’ve had days where I “hate” everything and everyone, I’ve had many more of the opposite. Being a patient myself has brought me unique perspective and empathy toward each patient, peer, or loved one I interact with. While the future will always be a bit more difficult than I initially planned, I’m excited for it will bring. There is not a day that goes by I don’t realize how fortunate I am to be living this beautiful life. I’ve been given the opportunity to grow into the best version of myself while helping others do the same. What more could I ask for?

Hank, my hero Life was beautiful on the 13th day of May. This perfect little bundle of joy was brought into the world and all was well. We can fast forward through my bliss and all the euphoria those first 3 months brought. In August, sweet baby Hank was diagnosed with hearing loss and referred to a Geneticist. A short 2 months after that, I sat in the clinic and listened to the physician explain as best as she could the finding of all the testing. Hank had a congenital CMV infection, his immunoglobulins were still elevated. As a result of this infection, which was estimated to have been from early in my pregnancy, Hank has a rare brain malformation called Polymicrogyria. Polymicrogyria literally translates to "many small folds". It's simply complicated. Too many folds on the brain mean that his brain is unable to form neuro-pathways that relay information. His brain can't talk to his body. Because of his malformation, Hank maintains the skills of a 6-9-month-old (he turned 3 this year). Hank is non-verbal and currently with no assistive device. He's limited to the use of a handful of photos of things that he recognizes. Hank does not have any independent physical skills, he has spastic and hypertonic muscles; we rely on equipment to meet all of his physical needs from sitting and standing to walking. He eats orally, but it must be completely pureed foods, nothing that requires chewing. He drinks homemade smoothies and a meal replacement to ensure he's getting proper caloric intake and nutrition. He has hearing loss in his left ear and cortical vision impairment. It's quite a list of the things he "can't" but we focus on what he "can" and that's so much more. Hank's smile can light up a room and is so infectious. He brings joy wherever he goes. He enjoys the park and going for hikes. WalMart is his favorite place to go. He attends preschool and loves art class. He is fascinated with electric trains and the piano at church. Hank has 3 older sisters who have slowly been taught what his condition means and they've embraced him. They take opportunities to show him things and to teach others about him. I don't believe in hiding away because of Hank's needs either. We live our lives in an adapted normal. Trips out of town, museums, aquariums, hiking, and the park. We are involved in our community through 4-H and a local foundation for special needs kids. I am diligently working with the National CMV foundation and state-wide physicians to educate doctors and the public on the impact of CMV. We travel and explore. We cannot wait for the world to accept disabilities, we must simply go be a part of it. Hank has touched the lives of so many people, with over 700 followers on his Facebook page and many who follow our WordPress blog. We're showing the world that we won't be defeated by the fragility of life, we must carry on. Through this roller-coaster of tragedy, we have found triumph. Hank has taught us unimaginable lessons, things that we would never have learned without him. He's brought a joy we didn't know was missing. Our days are so bright with his presence. While he cannot do many things because of his disability, because of his disability he is able to teach so much. Thriving with the Thorn A thorn in our flesh is such a vague description of something we are going through; addiction, health, relationship struggles, financial hardship, grief and loss, or unexpected life changes. They can be our own personal thorns or a secondary pain from a loved one. Either way we look at it, we all have one. Each and every one of us. My thorn came in the form of an (unknowingly) sick infant. Shortly after our arrival here in Florida, we started to attend a new church. There was this pull (or push maybe) to drive the distance to the church and I have never looked back. I had been there only a few weeks when I met a woman and her daughter. Her little girl had a condition and I was holding on to the secret of Hank’s. I asked her age, and as God would have it, she was 1 day younger than Hank. Hear me clearly; 2,197 miles away from each other we were delivering children with exemplary needs. Both of us unaware. To find each other at a church that sits nestled in the backwoods of a rural town in northern Florida on what is called the “Forgotten Coast.” You won’t ever convince me that there was not a divine plan here. I shared my story with her and while we shed some tears together, I knew that this is why I came here. I was brought here because I was not alone here on earth and that was my saving grace. At alter call that day, I walked forward to the associate pastor, Brother David Allen, and I gave him the short version of what was going on with Hank. He put his hands on my shoulders and pulled me in and he whispered, “We’ll love him anyway.” 4 words that held me tight. There was my final push. I had a choice to make right there. I was either going to carry this burden alone, with my own will power, or I was going to kneel down and place that load on the foot of the Cross for Christ to take. When I stood up, I felt free. I knew that from that moment I would never face this alone. By October of 2015, my son was diagnosed with a congenital Cytomegalovirus infection and Bilateral Polymicrogyria. In June of 2016, we were rushed to Shand’s UF in Gainesville for MRI’s and an urgent visit with an ENT. Henry was found to have a rather large mass in his throat and the initial differential (best guess) was a tumor. 1 week later we were booked for surgery to remove his adenoids and get a better look at this thing. In those moments I found Paul’s letter to Philippi. Throughout his trials and tribulations, of which there were many, Paul remained hopeful. He says in chapter 4 verse 12-13, “ I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.” In moments like these, where I have no power or strength or ability to do anything, I find myself drawn closer to His word. I can feel myself being pulled in to His arms where He is patiently waiting for me to put down the burden I picked back up. Trial and obstacle and scare after fear and heartbreak and hurt have occurred in these last few years. Rare brain malformation, deaf, vision problems, no sitting or standing or walking. No communication, feeding difficulties, blood work issues. Abnormal Xray or CT or MRI or visual exam. Surgery. Botox injections. Extensive therapies, equipment for every need, and travel and research. Financial strain and relational problems. Loneliness and worry. Life. Man, it gets you down and kicks you while you’re there. But by Grace, through Faith, wrapped in immeasurable love and unfathomable miracles, I have survived and I am here in front of you now, thriving. Thriving despite the thorns in my flesh. These thorns have not stopped me and I will not let them. They have redirected my path and given me purpose. My thorns no longer hold power over me, they power me forward. Tell me, do you have a thorn? What will you choose to do with it after today?

Being legally blind does not stop me from living! My name is Emilee and I’m legally blind! I was born with a retinal disease called cone Dystrophy, as well as Nystagmus (shaking eyes). My disability has given me a chance to find a love of public speaking and sharing my story. I educate others to break the stigma and change stereotypes or misconceptions about blindness. Did you know that 90% of blind people still have some remaining vision? Some people see a disability as a bad thing but I love mine. ❤️

Living with Arthritis at just 11 My name is Alyssa, I’m 18 years old and I was diagnosed with Juvenile Idiopathic Arthritis at 11 years old. My life since then has been a roller coaster. I’ve experimented with all kids of medications and natural remedies in an attempt to alleviate some of my pain. I began taking Methotrexate (mtx), Prednisone and Naprosyn when I was diagnosed, among other medications. 4 years into my diagnosis, I changed from mtx tablets to injections, and added Enbrel injections as well. This was due to complications I was having from the cocktail of medication that was going into my stomach - it was giving me really bad side effects. Together, these injections changed my quality of life. I have also had 3 seperate rounds of steroid injections into my joints which helped significantly. After 2 and a half years of two injections weekly, I decided that I couldn’t do it anymore. I was struggling with the severe side effects, the pain of the injections and the anticipation of them. At the beginning of this year, I had my final injections and began Sufasalzine tablets. This year I have tried many medications, however none have worked. I am currently working to receive new meds, most likely infusions. I also deal with debilitating migraines which can be really hard at times. However, just like my Arthritis, I do NOT let these control my life because I am MORE than my disease. Throughout the past 7 years, I have tried countless different tablets. I’ve been in hospital more times than I can count, and I’ve had more tests and appointments than most people will have in an ENTIRE lifetime. I’ve been close to the end, with my body losing the fight at one point. When I was 15, I was severely ill in hospital and my body could no longer keep up the fight. Thankfully, my doctors saved me and gave me another shot at life. I’m determined to make this second chance count. I am on a mission to spread awareness about JIA and shout it out to everyone that KIDS GET ARTHRITIS TOO! My account @chronicallylyss is dedicated to those battling this incurable disease, and details my life. It’s my dream to become a mentor for those who are just being diagnosed, or those who need guidance getting through life with a chronic illness so young. I consider myself quite the expert on this disease, so if you’re in need, give me a shout! Stay strong, warriors! ❤️