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What is Pierre Robin Syndrome? This is our beautiful daughter Aria Beth who was born with a very rare syndrome called Pierre Robin Syndrome. Only 50 babies are born each year in the UK with this syndrome. This is where a babies chin is underdeveloped meaning it's recessed which causes the tongue to fall to the back of the throat obstructing the airway causing breathing problems. Also, another part of PRS is a cleft palate. Our Journey with Pierre Robin syndrome My sassy little madam took no messing and decided to pull her ventilator out at 2 days old, was tube free by 7 months old and overcome cleft repair at 10 months old. Aria has had breathing tubes and feeding tubes in the first year of her life but has smashed through all these hurdles like our little warrior princess. She has learned how to breathe by herself, take milk from a bottle and overcome everything thrown her way. keeping our chins up with Pierre Robin syndrome I will forever tell my daughter she is 1 in a million and as us PRS parents say always keep your chin up. Pierre Robin syndrome babas are extraordinary and they fight every hurdle that is put there way. They truly are 1 in a million. This syndrome needs so much more awareness and I will forever share Arias story with the aim to help other parents who are just starting there journey.

Chronic Life My name is Hannah Stevens. I live in London and I’ve been in constant pain for the past five years. I have a rare autoimmune disease called scleroderma, as well as fibromyalgia, PCOS and IBS. Basically, my body just doesn’t work the way that it should. Every single hour of my day is punctuated by pain, exhaustion and a symphony of cracking joints. Sometimes we all feel like we’re being defeated by the things that are happening in our lives, but I fight as hard as I can to resist being consumed by the mental and physical problems that plague my daily life. In an attempt to spite the chronic weirdness going on in my body, I’ve worked tirelessly in an effort to achieve my dreams. I fight every single day just to get out of bed, so everything else has been a bonus. I may not have any choice when it comes to the health issues ravaging my body, but I’ve chosen to chase my dreams anyway. Sure, I had to alter my expectations a bit and I had to let a few dreams die, but I’ve found new ones and I’m throwing everything I can at them. I get to use my voice and my skills to share the stories of other people like me all day at work. Then when I get home, I share my own. I see now that there is immense power in sharing our stories and every single one is worth listening to. And while we may have some weird and wonderful stories to tell about our conditions or disabilities, they don’t define us. We can choose to be anything we want to be. I used to think that I had to overcome my disability in order to lead a successful life but there is no such thing. We don’t get to wake up one day and suddenly never be bothered by our conditions again - the world doesn’t work that way. However, I do know that we all have enough power to live the fullest life that we can, so I plan on checking every single thing off of my bucket list. My body may have limitations but that doesn’t mean my life has to.

Find your dreams, don't let anything stop you My name is Janiris Palacios and I'm from Venezuela. Since I was a little girl, I always loved to dance, but I never danced in front of anybody. I was so shy and had zero confidence in myself. During that time I felt sad, but something changed. My life changed drastically from a tumor that made me use a wheelchair at the age of 21. It was hard for me to get used to this new style of life. I felt depressed and lonely as if life was not worth it. I slowly started to adapt to the new me and found the strength in my old love for dance. Now I dance in front of many people, even in places of much relevance in my city. I feel happy and complete when I dance. I don't feel like I have a disability at all. I see myself like I am and I love that feeling. For all the people out there, find your own happiness. The road is never easy, but I guarantee that it is absolutely worth it. Give your dreams a chance, change the way you make it, but NOT your dreams. I'm your fan from now on! BEAUTY IS WHERE YOU FIND IT!

Preeclampsia and bedrest At 27 weeks pregnant, I had found myself in the ER with very concerning symptoms. I had severe swelling all over my body, difficulty breathing at night, and started feeling very ill. I was told that I had preeclampsia and was starting to exhibit signs of HELP syndrome. At the time, they told me I was going to be put on strict bedrest. With two kids at home, I was devastated. How do you tell your 4 and 2-year-old that you can’t get out of bed?? Sonogram The doctors decided to do a sonogram to see how our then 27 week baby girl was doing. They needed to check amniotic fluid levels and her weight. They brought us back to our hospital room afterwards and started asking a lot of questions. “When did you last feel the baby move?” As I sat there thinking, it dawned on me... because I had been feeling so sick, I hadn’t realized that it had been a couple days since I really felt her move. My heart was in my throat as this realization sunk in. And the doctors next words made the room fall silent, “we think we know what is wrong with your baby”. This whole time it never crossed my mind that maybe she was in distress too. That’s what preeclampsia does. It makes you feel so progressively sick and out of it that you are distracted from anything else. The doctor went on to tell us that our daughter had a huge mass on the left side of her brain. On sonograms, they can’t tell exactly what it is but either one is detrimental; a brain tumor or a brain hemorrhage. A huge decision We had to be transferred to a different hospital that could handle a significant brain injury in a premature baby. Once at the new hospital, it felt like time stood still as the same questions, the same tests, and the same conclusions were made. We were presented with three options: 1. Try and continue the pregnancy for as long as possible to allow our little girl’s lungs to develop more and to give her a little better of a chance after delivery. However, we were told that I probably wouldn’t be able to continue for very much longer. 2. Have a vaginal delivery, which would help my body recover much more quickly from the preeclampsia but would likely kill our daughter from the pressure of her already traumatized brain. 3. Have a c-section. This option would take longer for me to recover, but it would give our daughter a better chance at survival. We chose the c-section. It may seem like the obvious choice, but we were told that her chance of survival was very slim. They kept telling us that her quality of life would be so poor that it was the humane option to allow her to die peacefully. We felt selfish choosing a c-section at the time, but looking back, I have no regrets. Babies this little are measured in grams Once we decided to have the c-section, it was only 30 minutes before we met our sweet little Maddy. Babies born this early are weighed in grams. She was 950 grams, which is 2 pounds and 1.5 ounces. She was tiny and perfect. She was found to have a grade IV brain hemorrhage. Even after she was born, we were told that IF she survived, her quality of life would be very poor. They told us she would likely be a “vegetable”. Babies born at 27 weeks often have a lot of health and physical issues. But babies born at 27 weeks with a brain injury don’t make it and if they do, they have major healthy and physical issues. She stayed in the NICU for a total of 79 days. She had surgery to place a shunt because she also developed hydrocephalus, which is extra fluid on the brain. Our tiny miracle Once we brought Maddy home after those long 79 days in the NICU, we still didn’t know what to expect. Everything was “wait and see”. There was no way of knowing exactly what the hemorrhage damaged and what her outcome would look like. She came home at a tiny 4 pounds and 10 ounces and we were terrified to be entrusted with the care required on a daily basis. Maddy is now 4 and a half years old and one of the biggest sources of joy in our lives. She is thriving in preschool. She is incredibly smart and has the best sense of humor. She is very verbal and cognitively keeps up with her peers, but the brain injury did take a toll on her physically. She cannot crawl, stand or walk on her own. She was diagnosed with cerebral palsy, right-sided hemiparesis, and epilepsy. Despite the physical limitations, nothing stops her. She loves her two sisters, her cousins, family, and friends. Life is not without its challenges. Life for Maddy and for us is difficult. But when I look back at where we began, I am so grateful that God had his hand over our lives. We have learned more in the last 4 and a half years than I ever thought possible.

Sports after spinal cord injury Hi, my name is Sandro Krupljan, I'm 22 years old. I'm from Pola, Croatia...btw beautiful country...anyway...my story begins on April, 15 2015...that day I fell down from the second floor of a building. I spent 3 months in the hospital and 4 months in rehabilitation. It was very difficult for me then, but I told myself to never give up on life. In rehabilitation, I met good people who helped me survive the situation. After the rehabilitation I started a lot of exercises and engaged in sports. The first days were difficult, everything was odd working in a wheelchair, but later I got used to that kind of life. I started training at the gym, and I also started training in basketball. I'm an athlete, I won my first bronze medal at the state competition for disabilities in athletics. My coach was very proud of me and my team. All people with disabilities should be involved in a variety of sports and feel great about it because only sky is the limit.

With family love like mine you can do anything I have Cerebral Palsy and face challenges every day, but I do not let it get in the way of my dreams. I love to perform and make YouTube videos. My YouTube channel is called heidipants. This is where I can be myself. Every day without a doubt you will see me smiling. Whether it be a bad day or not and if there are challenges, my family makes it possible : )

C A N C E R Two years ago I was diagnosed with stage 3, Hodgkin's Lymphoma. Lymphoma is a blood cancer and spreads throughout the whole lymphatic system. I completed 3 PET scans, 2 surgeries, 1 mammogram, numerous CT & EKG scans, a sh*t ton of blood work, weekly visits to the hospital for PICC line flushes and dress changes, prescription medication, and 12 A.B.V.D. chemotherapy sessions every 2 weeks for 8 months. High on life When I reached my last chemo session I couldn't be happier and more excited to get back to "normal" life. I waited 1 month for my CT scan to confirm I was in the clear before I went out looking for work. I was determined to "live each day to it's fullest." I began setting goals for myself not letting cancer limit me. I started to run, hike and swim. Getting back into fitness right away was important to me. I booked a flight to Thailand because I had always wanted to go there since I was 15 years old. I went by myself and ended up meeting some pretty cool people from all around the world. I was constantly chasing one "high" in life after the other. This doesn't sound like such a terrible thing. It was all quite amazing, life-changing, and fun...BUT there was one thing I failed to let myself do. I failed to heal. I didn't let my body have any time to recover from the hell of chemotherapy and cancer. I ignored my emotional health. I bottled up all my fears from cancer, hoping that they would stay in. I didn't talk about it with anyone. I was scared and felt insecure and judged if I were to talk about it. I feared that people will find me ungrateful for complaining about life after cancer. I felt guilty for even having those thoughts when I was lucky enough to have survived. After cancer is a time when we need our people the most. There is very little support from medical teams that are targeted for cancer survivors. As medicine continues to advance, we are seeing more and more cancer fighters surviving (which is great!!) but nobody knows how to help them cope with the anxiety, guilt, fear, and stress of processing everything that they just went through. 2 years later I've been doesn't years cancer free and its been everything years of neglecting my body. The past life-changing weeks I have been reminded of what it's like to go through hell again. I developed a functional neurological disorder. I have seizures every day. They are non-epileptic seizures so your typical epileptic prescription pills won't help my case. "One" seizure lasts anywhere from 10-20 seconds, and I can have anywhere from 3-20 at a time. That 'episode' can average up to 3x a day. After cancer, I developed a few other illnesses I didn't have before cancer. I was diagnosed with PCOS (Polycystic ovarian syndrome). I have cysts on both my ovaries. I also have Fibrocystic breast disease. I have many cysts in both breasts and armpits, which makes it extremely hard to differentiate breast cancer or fibrocystic cysts. I am now asthmatic. One of the chemotherapy drugs called 'bleomycin' harmed my lungs. It's known for lung toxicity but that side effect doesn't die from cancer. (They all do). I've ... with a form of PTSD (constantly stress disorder) .... that one makes sense. Going through cancer feels pretty much like going to war, but with your own body. H E A L I N G Since these seizures arrived, It has been a wake-up call for me. My body is screaming for help and healing. I am going to focus on healing my body emotionally, spiritually, and physically. I am going to breathe and meditate through my anxiety. I am going to work on not holding my feelings inside. I am going work on becoming more vulnerable. I am going to share my story to heal myself and to help heal others. That is my goal. My next 'high" in life is to heal myself and hopefully help others in the process. Thank you for reading. For more of my posts, you can follow my healing journey on both Instagram & Facebook. @LifeafterLymphoma_ - Xoxo, Kar

Proving the Doctors wrong with Caudal Regression Syndrome My name is Tanja (@tanja.henseler) and I was born with Caudal Regression Syndrome. According to the doctors who diagnosed me, I would never sit up, walk or do anything on my own. I am proving those doctors wrong because I am a fighter. I have had numerous operations, which has made me stronger. You can do anything you want. It's up to you, and how much you believe, fight and work. There are limits only in the head. I was a very active child and now I have started wheelchair racing. It's my passion. I have participated six times. I was in the junior world games and this year I will be at the European Championship in Berlin. My ambition is to take part in the World Championship next year in Dubai and at the Paralympic Games Tokyo 2020. To reach these goals, I work hard every day.

Little Pearl Gretchen, our little pearl, perfectly named by all three of us. She was so tiny and bruised, with swollen eyes. Grady didn't think she was too cute, but we loaded her up at 2 days old and brought her home. I should have known, I should have seen it, maybe some did and just didn't tell us. We went in with no assumptions, to her first pediatric checkup on day 5. The doctor walked in and very matter of factly said 'we suspect she has Down syndrome and you will need to take her in for blood work.' Then we waited and cried and asked why. But mostly we just loved her, fed her, held her and treated her the same way we did the first 5 days. Down syndrome has become a part of our everyday life in so many ways. But even more than that Grechen's spirit has made our family whole. We want for her the same things we want for Grady. She may have to work harder, but she will achieve all that she wants with us by her side and continuing to advocate in her honor while educating those who are uninformed about the life of someone living with Down syndrome.

Staying positive as an Amputee Hello everyone! (: My name is Cristal (@Cristal_amputee) I am 25 years old, Mexican & Puerto Rican living in Pennsylvania. On August 24, 2017 I had my right leg amputated due to "nacrotizing fascilitis" which is a flesh eating bacteria. I remember being in the ICU upset & angry because I couldn't see my 3 children (ages 7,5 & 2). I went two weeks without seeing my babies. I kept telling my nurses/doctors to please make the surgery go quickly because I needed to be with my children. My kids were the ones who motivated me & they still do. Everything I do is for them. Everyone till this day keeps asking how I stay so positive & honestly it's my children that help me. Also, I had & have a great support from my family & most importantly my fiance. All I can say is to always try to stay as positive as you can be because i know YOU CAN DO IT! Never say you cannot do it. Always remember that there are people in worse situations & they still DO IT!. It's okay to cry because we are only human! Always smile because you may never know when your last day will be, so live it to the fullest!

Isla Seamone brings joy into our lives Isla Seamone (@shelby_a_paler) made her debut two days before my induction, she was ready to conquer the world. In my second trimester, we first learned that our baby girl had complete AVSD and later informed that Isla was high risk for Trisomy 21. When the doctor informed me of the news I remember feeling the room closing on me, I could not breathe. How was this happening and happening to me? Crying, I will never forget the doctor saying, "Would you like to leave the office through the back door?" At that moment I became a Mama. Saying to myself, "No, I will leave from the front," I will not leave in shame. God graced us with Isla for a reason, we will walk this path with him, hand in hand. Isla is the absolute light of our life. Every day she inspires us with her strength, love, and curiosity. My whole life going through school or work I felt something was missing that I had not found my niche. All of that changed once I had Isla. She is my calling, my purpose to push forward and not for myself but for her. To be her voice, her advocate and biggest fan. Thank you, Isla for making me your Mom and for bringing such joy into my life.

The world from another prospective by Giulia Lamarca Hi! I am Giulia Lamarca, a 27 y/o psychologist, traveller and dreamer. I had an accident seven years ago on October 6th, which forced me to use a wheelchair. I cannot walk anymore! The accident took a lot away from me, but at the same time gave me so much. During my recovery at the hospital I met and fell in love with the one that my husband today. At the end of my rehabilitation he asked me to come to Australia with him.... I said YES, just for fun! A moment later we were on a plane heading to the kangaroo-land, which was our first adventure together. From that moment, traveling has been my way to walk around the world, to rejoice and feel free! He even asked me to marry him at the airport in Paris!!!!! We have a goal to visit all the wonders in the world together because we believe that they should be accessible for everybody. The wheelchair taught me to see life as an adult at a child's height. This allows me to see with the eyes of whom see things for the first time again! It's like I am only 7! If you like my story, follow me! Coming soon... travel blog!