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Superhero Sam On 01/02/19, my (@lusindfoz) son, Sam, died of pneumonia complications. His kidneys and liver shut down until his heart stopped. Sam was born with a bad brain formation and a unique syndrome. Some superheroes come with supernatural powers, become invisible, move from one place to another very quickly, while others become big and green. I had the privilege of living with a small warrior and superhero. Sam had supernatural powers, but he had the power to make the best of me, to give my life meaning, and to enrich me! Since birth, he had been strong and willing to live, and by the end, he bravely kept trying to live! Sam deserves heaven. I always tried to make Sam's time on earth the best I could! Special needs maternity was not easy, but he helped me. I always believed in angels and now I know I took care of one. Sam's time was short with me, but it was the best 2 years and 8 months of my life! Today Sam is free of limitations. Play, run, sing, and be free. We will love Sam forever & miss him every day. We feel devastated and lost without him here.

Recently (May 2019) my wife and I took our second overseas trip (Los Angeles to London) taking the Atto mobility scooter (www.movinglife.com) with us. As on our previous trip in 2018 (Los Angeles > Toronto > London > Los Angeles), we had special "check at gate" tags put on the scooter at check-in, and had to answer some questions about the scooter (weight, battery type, etc.). Then my wife was able to ride the scooter to the gate. At that point we had to fold it up for special check-in. It gets special handling, like wheelchairs and baby strollers. Upon arrival at our destination they bring the scooter back to the gate, and this makes the long distances at the airport easier traveling for my wife. Thanks to the Atto's fold-up design it's easy to get a normal cab, and put it in the trunk and still have room for our bags. We travel with just two carry-on bags and two personal items for the two of us. Although Atto says the scooter can be put into the overhead bins (in two parts) our experience so far has been that we've had to check in the scooter. Flights are just too crowded for them to allow us to take up two complete overhead bins for this, and we have not had the luck of free space in the cabin closet. However, my main reason for writing is to share our experience with the Atto taking the Eurostar (the Channel Tunnel train) from London to Brussels and back. Before booking tickets online I read the Eurostar information about taking mobility scooters on the train. According to the space allowance for the scooter the Atto is just slightly longer than the space indicated. However, I figured that if worse came to worse we could fold it up. Why leave the scooter open at all, when it folds up so easily? It turns out that when you book your ticket, and indicate that you have a wheelchair (below and to the right of where you fill in "To" and "From", "Station", "departure dates", etc. there is a small line to the right that just says "wheelchair"). Clicking on "wheelchair" brings you to a different menu for putting in your departure and return dates, and this is where you indicate there is one adult and one companion (unless there are more traveling). The adult with the wheelchair (or in this case the scooter) and the companion get special rates. For example, when I picked some dates in July 2019, from London to Paris, and back to London, the total rate for two people was £296 ($384) for the Standard (cheapest) tickets. (I chose Paris for the example, as it may be more popular than Brussels from London). However, by choosing the wheelchair option the rate drops to £29 ($38) per person each way, for a round trip total of £116 ($152). This is less than half of the full rate for the cheapest tickets! Also, instead of Standard tickets these are either Standard Premier or Business Premier tickets, which are First Class, and include a light meal! If you have more than two people traveling the others would pay the full adult or child rates as far as I know. Only one "companion" gets the discount. One caveat is that, in theory the person in the wheelchair or mobility scooter will travel sitting in the wheelchair or scooter for the entire journey (about 2 to 2.5 hours). I was prepared to do that, as my wife has back pain problems. I just hoped that there might be a free seat that I could move to once we departed the station. So here is my report on what actually happened taking the Atto mobility scooter on the Eurostar. The staff at the Eurostar stations were extremely helpful with "Special Assistance". There is a different line (queue) for check-in, and by booking the wheelchair option there was staff help, and a ramp, available at our train coach for driving the scooter right onto the train. Only some of the train coaches are equipped with the wheelchair spaces, so when you book your tickets you'll be assigned one of these, with the companion seat next to it. In spite of the scooter size limitations, which are mentioned on the Eurostar web site that indicate that the Atto is about 1.5" (38mm) too long, I found that there was easily room for the Atto scooter on two different coach configurations. See the photos which show how the Atto fits into these spaces. The wheelchair space. Also, while theoretically the user has to sit in the wheelchair or scooter for the entire journey, the Eurostar staff told me that this rarely happens, as they know it is more comfortable to move to a proper seat, so there is usually a nearby seat that is left empty. This was the case for both of our journeys. So I can't promise you 100% about this, but this is what the staff told me. The bottom line: Taking the Eurostar from London to Paris or Brussels with your Atto scooter is easier and more comfortable than flying, and that the wheelchair option makes you and your companion eligible for bargain rates! I hope this will be of interest and help to other Atto users. Happy traveling -David Starkman, Culver City, California

"It takes courage to grow up and become who you really are." - e.e.cummings I have been so inspired by the lives of the many children we know who face life threatening illnesses and disabilities. Children with physical disabilities, like my own son, or those with medical complexities or multiple diagnoses - they have incredible strength and courage and are a living testament to the unbending spirit that resides within all of us. These beautiful children have added a whole new dimension to my own perspective on life, as I hope they do to yours. These children's lives are filled with therapy sessions and doctor's appointments. They have been through surgeries and procedures and have had so much to endure at such a young age. It doesn't make sense. Why should a four year old have to battle cancer? Why must a baby never know a life free from tubes and machines? Why does a young child have to struggle so hard to do what comes so naturally to others? Why? Life can be unfair. Life can be hard, and we don't have all the answers. It takes tremendous courage to face the challenges that have been placed upon us. Sometimes the weight of everyday life can be overwhelming and it takes courage and strength to plow through. Mary Tyler Moore said, “You can’t be brave if you’ve only had wonderful things happen to you.” It's true. There would be no need to be brave if life was easy. The fact is that we all face challenges and adversity. It is how we handle ourselves and how we choose to face our challenges that will have the most impact on the path our lives will take. It takes courage to live this life. Children with severe disabilities and medical conditions possess an incredible strength and bravery, and parenting them requires tremendous courage and strength as well. I struggle with fear about so many things - the responsibilities are enormous - but I have begun to understand that I can acknowledge the fear, and move on with courage. There are many things in life that are scary, but some of the best things in life are things that scare us at first. Like traveling across the world, changing career paths, starting a new relationship, having a baby.. receiving a diagnosis.. and raising a child with special needs. All of these things may make you scared when you first think of doing them, but it can be even scarier to think of not doing them. Sometimes you come out of those scary, painful moments a different person. A better person. A happier person. Those scary moments can make the happy moments that much happier. Does that make sense? My life didn't go as planned for me, and that's ok. That's more than ok. In fact, I've never been happier! I think sometimes where you think you want to go, is not the place where you will find your heartfelt, most meaningful, most purposeful life. I have found that purposeful life in raising my child with special needs, and caring for other children with disabilities. I have learned that I can do hard things. I would never before have considered myself brave. I don't like roller coasters or airplanes. I don't eat strange things. I would never go bungee jumping or sky diving. I am not brave in that sense. But I have learned over these past eleven years that I am braver and stronger than I ever thought I was. It's not easy. Sometimes courage is so hard to find. When your tank feels empty, it can be hard to believe that you have any courage left at all, and finding renewed strength isn't always something that you feel capable of. When you think you've done the hard things, there are always more things that require more courage, and you just feel like saying, "But I've already done the hard things. I'm taking a break." But of course, there is no break. I am continuing to learn about being brave, and having courage. I learn from all of your stories, as they have brought inspiration, joy, tears, understanding, truth and love. My heart is full and I am grateful for all that I have been given, and all that I continue to receive. My son, Brennen is a constant source of strength for me. I am driven by the strength that comes from within him. I have learned so much from him, and have grown in ways I wasn't expecting. There is no question that my life has changed forever with an increasing awareness of my own strength through adversity, and a greater understanding of what's important.

On the 31st of August 2014 Joel had a fall over a staircase railing and broke his C5 vertebrae. The injury that night left Joel an incomplete quadriplegic. Joel was in the infantry in the Australian army and had just returned from service in Afghanistan a few months prior to the accident. Since Joel's accident, he has been determined to work hard and one day walk again. He recently returned from a 6 week stint at Project Walk San Diego where he made many gains and plans to return in the future.

Mighty Mickey CP Hero Hi, I’m Mighty Mickey. I’m a 7-year-old identical twin who has Spastic Diplegia/quadriplegia (depending on the doctor you ask), GMFS 3. Along with my twin and mommy, we decided to fight against it and not let it define me, but rather strengthen me. Multiple physicians and therapists told my mom I would never be able to walk independently, but they didn’t know we had several secret weapons: we don’t let anyone tell us what we can or can’t do, we never give up, we are fighters, and when my mommy and I here the words can’t or won’t we get extra motivated because we know we will prove them wrong. My mommy was able to get me in with a superhero himself, Dr. Park, who performed SDR surgery on me and took away my spasticity. However, we encountered multiple hardships along the way. After years of traditional therapy not showing much progress, and the pandemic taking those therapists away, my mommy decided to take matters into her own hands. After reading and educating herself we began my superhero training. And guess what, I’m walking. All those doctors are in awe. And I am just getting started. I want every little boy and girl out there who can’t walk YET to never give up. I asked my mommy to start me an IG and YouTube so I can let other kids know, “fight the fight, and never give up.”

Looking back on the day Nora was born, I always tell my husband Jim we should have played the lottery. The day Nora was born started out like any other. I was scheduled to have my bi-weekly NST and ultrasound and our scheduled c-section was still two days away. Luck would have it that we were given the news that our daughter would be born that day, and we would not be waiting-my NST was non reactive and my doctor was ready to bring our little one into the world. Lying on the operating table felt familiar and cold-I had had a C with my older son Ben and I was thankful I wouldn't have to be induced again. My husband came in and we were ready to meet our daughter. When Nora was first born, I remember waiting to hear her cry. She was a bit pre-term at 36 weeks, 5 days. I heard her wail and tears immediately came to my eyes. A neonatologist was in the room that day as she was pre-term and he took her to be examined. The words came from his lips so nonchalant that even to this day thinking about it gives me chills-"she is showing some signs of Down syndrome." I remember staring blankly at my husband, "what?" is all I could blurt out. They let me see her quickly before she was whisked away to the NICU. In the recovery room, I was numb-literally from both the epidural and spinal tap I had been given. My husband came back from the NICU visibly upset. Ironically enough, Jim is a special education teacher and had worked with children with Down syndrome in the past. All he kept saying was "I hope her heart is okay." The neonatologist came in and explained to us that they would be doing an echo the next day and also explained to me about her hand. You see, Nora had been born not only with Down syndrome, but also (unbeknownst to us at the time) Symbrachydactyly​ causing a right hand anomaly​. The doctor seemed extremely focused on us seeing a plastic surgeon-even insisting upon it. And I remember thinking, why is he so insistent upon us doing this? ​​ The next few weeks were a blur. In and out of doctors offices, and all types of medical professionals telling us "what to expect". We luckily found a local GiGis Playhouse and were connected with Lucky Fin Project. Oddly enough, I think it took me longer to come to terms with Nora's hand. People always ask me if she will need a prosthetic and I tell them no. She was born the way she was and will adapt. I remember asking her plastic surgeon the same thing myself and him smiling and saying "a prosthetic is something that will make other people feel better, she will adapt just like everyone else". And Nora has shone brightly ​these past​ two years​.​ ​S​he​ has proved to us that she​ can do so many amazing things​ with just one hand​. She is a superstar and hasn't let anything get in her way-she has her own personality and she sure as heck lets you know what she wants and means to do. I was 28 when I had Nora. My odds of having a child with Down syndrome were about 1 in 1, 000. My odds of having a child with Symbrachydactyly was about 1 in 40,000. We hit the jackpot with Nora and I'm SO proud and blessed to be her mom.

Klipp- what? Klippel-Trenaunay Syndrome (KTS) is a rare condition I was born with as a result of a mutation whilst a developing embryo. It means that people with it have venous malformation of an area of the body- it could be on their face, legs, arms, torso... For me, it affects predominantly my right leg. I have lots more veins in my right leg, and many of them don’t work properly- leading to swelling. Doctors say because I had more veins on my right side my bones grew more- leading to a leg discrepancy. My arms are also different in length, and my right side is always warmer- meaning my left side can feel very cold! I always seem to be the first to get too hot or cold. I sometimes walk with a limp, especially when I’m tired! Or when my leg just doesn’t want to play ball. For some people, they have port wine stains, I don’t have any very noticeable birth marks on first glance, but my skin on my right side is darker/more veiny (from shoulders down) and you can especially see this in the heat. The downside of Klippel-Trenaunay Syndrome (KTS) We are at a heightened risk of blood clots, usually develop lymphoedema (extra swelling-yay!) and are more susceptible to skin infections on the affected limb. I’d also add to that that we get tired, we have a heavier than usual limb/s to lug around and our circulation isn’t great- our bodies have to work harder to maintain normality. A few numbers With any disfigurement often comes anxiety and depression. As the charity @changingfacesuk stated in study findings; only 3 in 10 young people said they would like to be friends with somebody who has a visible difference. So you can see why it can be mentally tough having KTS. The amount of people who haven’t heard of Klippel-Trenaunay Syndrome is very high, mainly because it is so rare. @greatormondst states that it affects every 1 in 20-40k children! I’d say, if I do come across doctors who have seen KTS before I am surprised! Most medical professionals have to do a quick Google of it before they see me! Self Esteem and Confidence Living with a visible difference can be a challenge. Especially for me when I was going through my teenage years. Social media hadn't really taken off and there wasn’t much diversity in the people I saw in media. There is always an underlying pressure to look perfect. As a teenager, I was frustrated that my leg didn’t look like everyone else’s. My condition can’t be “fixed” and it won’t “get better.” Every outfit I wore depended on how my leg would look with it. I would only wear certain neutral/shimmery colors on my toes because I didn’t want to draw attention to them on holiday. I’d never wear colorful socks if you saw them above my shoes, I would only buy black shoes so nothing would draw attention to my leg. I refused to go on nights out showing my leg off. I did not want to draw attention to it. I would never wear shorts in public (unless I was sunbathing on a beach - oh the dreaded beach walk- the awkwardness and the stares I felt) And worst of all, if I were to have my legs showing I would never ever have my stocking on - that was a massive no-no. So sometimes I would go a whole evening not wearing compression because of how I hated it looking different and my poor leg would ache afterward. Exercise is the best painkiller Pain management resulting from all those silly veins is also a struggle for many too as many painkillers don’t work. However, I’ve re-discovered the gym and I’ve found out that exercise is the best painkiller for me and also gives me a positive buzz. I am currently training for a 10k run - we will all be dressed up as Santas- in December to raise money for Great Ormond Street Hospital. This is giving me a sense of purpose and most importantly I’m raising money for a charity which has helped me and my KTS. Other active things I like to do is paddle board and surf. I love to be in the sea, so whenever I am by the coast I’ll try and do that. Swimming is also great exercise - the doctors always recommend I do it- because water acts as a natural compression for my leg and it's not hard on the joints. Accepting my body Now, I am getting comfortable in my own skin. Starting my blog on Instagram @elknacc has been a very significant part of accepting my body. For the first 6 months of having the blog, I was a different person- the thought of even taking a photo of my KTS foot and putting it online made me anxious. But I wanted to share my experience in hope to help others. Having my blog has enabled me to connect with people across the world who also have KTS, raising awareness of this rare condition and also building up my confidence and self-esteem. I only have one body so I’ve got to take care of it- and that means mentally too- positive thoughts about your body go a long way! It’s taken off a massive pressure I used to put on myself to look “perfect”. Getting out of my comfort zone I think travelling -throwing myself into new surroundings- really helped shift my mindset about my body. Exploring 3 new countries in 2 months was an amazing adventure. Learning about different cultures and their history required having an open mind. Whilst meeting new people everyday and forming friendships increased my confidence in engaging with people. If people asked about my leg (and they did- a lot!), I would simply say "I was born with it", and a conversation would flow that way. I was also outside my comfort zone trying new things like mountain biking, trekking up mountains and activities such as swimming in the sea where there were stingrays. Because of the busy schedule and nature of the activities it was so so important that I looked after myself and my leg, other wise there would be consequences: leg infections and fatigue! Social media has also helped too as I am following other people's journeys with differences; which inspire me. My goal is that people with medical conditions and insecurities will see my journey of acceptance and be inspired to be a bit more comfortable in their own skin. It takes time and it’s not easy breaking habits of a negative mindset about your insecurity, but it’s worth pushing through.

Hi my name is Nick and I was born with a birth defect called Spastic Dyplegic Cerabal Palsy. I was born 17 weeks premature and weighted less then 2 pounds. Doctors told me I had a 2 in 10 chance of living... Now, I play wheelchair basketball in Newfoundland and I'm aming to make Team Canada by 2020 for the Paralympics games in Tokyo Japan! Until then, I will finish high school, continue working out, and keep practicing to be a better play and hopefully represent Canada in 2020!

Hello! I'm Dani and I'm 26 years old. I live in Chile! I am currently a national basketball player and a salsa dancer in a wheelchair. I was born with spina bifida, and as the result of a tumor in the marrow at age 15, I started using a wheelchair. From there it opened a new world for me! I practiced sports that I never thought I could do. From that minute I stopped putting barriers up and the word "boundaries" disappeared from my vocabulary! I love to travel! I am very passionate and optimistic in everything I do! They say that life is not the party we hope for, but as long as there is music, we must know how to dance!

About Me You’re probably wondering why I’m showing up on your screen today, so hi there! I’m Sally. I’m 14 years old. I don’t normally like to introduce myself with this normally, but I think it’s best I mention my disability. I have a life-limiting condition called Spinal Muscular Atrophy, which means I can’t walk, move much, or even breathe well. I don’t let it bring me down though; I’ve sung to hundreds of people, played on par with paralympians, and traveled many countries. About SMA SMA stands for Spinal Muscular Atrophy. It slowly takes away a person’s physical strength by affecting the motor nerve cells in the spine. SMA is caused by mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is vital to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to SMA. SMA affects around 1 in 10,000 babies, and approximately one in every 50 people is a carrier of the gene that causes SMA. There are four primary types of SMA, Type 1, 2, 3 and 4 (I have type 2!). The higher the number the less severe it is. People affected by SMA have difficulty performing the basic functions of life, like breathing and swallowing. Luckily though, SMA does not affect a person’s cognitive ability. A common perseption of people with disabilities is that they don’t like being disabled. I can’t say I “like” it as such, but I’ve come to terms with it and it’s made me who I am today. The quirky, over-caffeinated and musical theatre obsessed who’s sharing my story with you all!

A Companion's Review of the Atto Mobility Scooter My wife has had multiple sclerosis for over 30 years. In recent years a combination of back pain and fatigue have made it difficult for her to walk distances more than a city block. Just that walking uses up her energy. A mobility scooter has been the answer to allowing her to be mobile and, extend her daily stamina. As her carer/companion I am the one who deals with putting the scooter in the trunk of the car and having it ready for her to use. During the last few years, we have actually bought three mobility scooters. A sad fact about these scooters is that local dealers, even in a city as large as Los Angeles, where we live, only carry a few brands and models. Online there are hundreds to choose from, and many are much more portable than those available locally. So all three scooters were purchased online. Because we like to travel, I wanted us to have a scooter that could fold, or be broken down to fit in the trunk of a car, and also to be able to be transported by the airlines. The first one fit that description, but it was a bit awkward to fold and would take up all of the room of an average car trunk. The second one was much lighter, and, if broken down into about 5 pieces would take up a lot less room in a car trunk. I thought that would be our final scooter purchase. However, while doing some online research to help a friend find a scooter for his wife, who is a lot less mobile than mine, I ran across photos and a video for the Atto Mobility Scooter by MovingLife. (www.movinglife.com). After a couple of years experience with other scooters, I could immediately see that the unique design of the Atto scooter solves many problems that no other scooter does. This is because in less than a minute the scooter can be folded from a full-size to the configuration of a rolling suitcase, not much larger than a carry-on size rolling suitcase. I read that the designer of the Atto came up with the idea for this scooter when using a conventional scooter in New York. Taxi cabs would not stop to pick him up! Waiting for a taxi with the Atto, it looks like you are waiting with a rolling suitcase. On a recent trip to Toronto and London, we used taxis many times, and the Atto worked out easily, just as I hoped it would. Folded into it's smallest configuration the Atto still weighs about 66 lbs (29.9 Kilos) with the battery installed. I'm 68 years old, and this is a bit heavy for me to lift into a car trunk alone. However, in seconds it can be broken down into two parts, one weighing about 36 lbs. (16 Kilos) and the other about 30 , (13.6 Kilos). I can lift these into the trunk with no problems. Putting the two parts back together, and unfolding it for use, can be done in less than 60 seconds. Traveling with the Atto Mobility Scooter At restaurants with the other scooters, it was often difficult to ride it into a small restaurant and find a spot to park it. The Atto could just be rolled in with us in Trolley Mode (rolling suitcase size), and in the park, the configuration would often even fit under the end of the table. At worst it would not take up too much room parked next to, or near, our table. No elevator available? In trolley mode, it can be pulled up or down steps (with a little effort, rolling up or down one step at a time), and can be taken on an escalator in the same way as a rolling suitcase. If an extra small elevator is encountered, again, it can be quickly folded into Trolley Mode to take into an elevator. We also put it in trolley mode to get on buses and the underground. We have been very pleased with this scooter for both travel and local use. The quick folding and unfolding make it very transportable even in a conventional car trunk. In an intermediate size rental car that we used on a recent trip, we got the Atto in the car trunk in two pieces, and still had room for three airline carry-on size pieces of luggage, a computer briefcase, and a full day-pack. Taking it on an aircraft for travel was also quite easy. When checking in the airline issued special tags for the scooter. Then my wife rode the scooter to the aircraft gate. I folded it into the park position and removed the battery (it weighs a little under 4 pounds or 1.75kg, and even has a fold-out carrying handle). This is also a nice feature. The battery easily pops in and out with the push of a button. Airlines require that the lithium-ion battery is carried with us in the cabin. After removing the battery they took the scooter away to put in a special storage area. After arrival, they brought it back to the gate. We unfolded the scooter, put in the battery and were ready to go! Another travel bonus is that because there is a large flat area under the seat, there is room for two legal carry-on size pieces of luggage to be transported while riding the Atto scooter. A final nice feature about the small size, when folded in the park position, is that it takes up a lot less room for storing it at home. I have not seen a mobility scooter with a better design for portability and ease of use, and it met all of our expectations on our recent overseas trip! As much as I think the Atto is the best and perfect mobility scooter for me and my wife, some people may have requirements that may make the Atto not a good choice: If you are alone and do not have a carer/companion to help with the scooter, you have to have enough strength to be able to fold, unfold, and lift the two parts of the scooter into a car trunk. Personal Mobility Also, as with any mobility scooter, you have to have a reasonable amount of personal mobility to be able to use it. Otherwise, an electric wheelchair would be more suitable. In order to be able to fold the way it does, the seat is thin and curved for comfort but does not have much padding. A perfect fit cushion kit is available that will solve the problem for anyone who wants extra padding on the seat and seat back. The back of the seat is low. If you need full back support, this would not be suitable. The speed is controlled by a lever pressed by the right-hand thumb. My wife likes this better than a rotating grip throttle, which is harder on her wrist. However, if you have problems with your right thumb this could be a problem. I believe there is a left-hand throttle conversion kit available for those who cannot use their right hand. For more information about the Atto Mobility Scooter, or to order one, see the manufacturer's website www.movinglife.com.

How Chronic Illness Impacts Ellen's Life Living life with chronic illness is beyond frustrating... and honestly, beyond what most healthy people can completely understand. I say this with all the respect in the world. It is simply a reality. Unless you have walked in the shoes of chronic illness... you can not understand the weight of it that one must carry... now imagine being 13 years old!!! Ellen told me the other day that her pain has "erased" memories from her. When she tries to think of her childhood... it is a massive blur. She said ... the memories she does have... feel like she is standing beside herself... watching. That is what pain does. It slams into you, knocks you to the ground. It weighs down on you with a heavy that is like no other... It alters your perception, darkens your view, and leaves you cloudy. Day after day ... after month... after year... We keep searching for "help" for her. I pray we can find it. We started having "the talk". Next week we meet with the surgeon. Ellen has already seen the GI and surgeon regarding her ongoing stomach issues. "Plans" are coming in the form of motility tests in early January while she is inpatient at Children's Hospital. We have already been told surgery is inevitable. We have started discussing some of the possibilities and what each will mean for her. She asked me if it will take the pain away. I don't have an answer for that... and THAT breaks my heart. I certainly hope it will. She is not interested in having a bag. She agreed to a resection tonight... as that is the nearest thing to "normal" we have as an option. At this very moment in her life... she "should" be thinking about her friends, her favorite books and weekend plans. She "should" be completing science projects and looking forward to the next school dance. Instead... she is planning what her life will look like with less of her large intestine... contemplating life with possibly less pain... agonizing over another surgery... fearing recovery time and dreaded time in the hospital. She asked to sleep with the lights on tonight. Breaks my heart. #TeamEllen #EDS #EhlersDanlosSydrome You can join Ellen's Journey with EDS at https://m.facebook.com/empoweringellen/