Dear Julianna,

Hi!  My name is Crystal.  I'm 29 years old and I have Muscular Dystrophy like you!  I'm so happy to write you this letter!  I hope you read it, and maybe even write back someday.

Let me tell you a little bit about myself. When I was a baby, I didn't crawl or walk, so my mom and dad took me to the doctor.  That's when they found out that I had Muscular Dystrophy.  They were sad, but they didn't treat me any differently.  In fact, they encouraged me to do well in school, make friends, and achieve any goals that I set, big or small.  I even loved playing outside with my little brother and sister.  I taught my brother to skateboard even though I couldn't do it myself!

Elementary and middle school were fun for me.  I made lots of friends and joined lots of clubs.  I was in choir, Spirit Club, and National Junior Honor Society to name a few.  I was even asked to the 8th grade prom by a cute boy!

High school was a little bit different.  The other kids were nice to me, but it was harder for me to make friends.  I felt left out sometimes and I became very shy.  I think they saw my wheelchair and were afraid to talk to me or ask me questions.

After graduating from high school, I started college in my hometown.  I joined a sorority and had lots of fun, but something was missing.  I really wanted to move away from home, but I was scared!  I didn't know who would help me get ready for school in the morning and get into bed at night.  Finally, I decided to do it.  I found a school I wanted to go to  (6 hours away!) and I moved.  It was scary at first, but it ended up being the best decision ever.  There were people to help me in the morning and at night, I felt more independent, and I gained confidence so I wasn't as shy anymore.  I really hope you get to experience that one day!

Now I live in my own apartment with my boyfriend and our 2 little Chihuahua dogs, Ebi and Ino.  My dogs love to curl up on the footrests of my wheelchair and fall asleep.  They don't even like to go on walks...they'd rather ride on my chair!

I know that being in the hospital is no fun and having Muscular Dystrophy can be scary and make you tired, but I just wanted you to know that there are lots of friends here who know just how you feel.  If there is anything you want to do, you are more than capable of doing it!

Your Friend,

Crystal Garcia

Image Description: 1) Crystal and her boyfriend are out for a birthday dinner. She is sitting in her power wheelchair wearing a strapless dress. Her boyfriend has his arm around her. A plate with dessert is in front of them with the words "Happy B-Day" written in chocolate on it. 2) Crystal's two Chihuahuas sitting on Crystal's wheelchair footrests between Crystal's bare feet on a pillow. Both pups are wearing matching red sweaters.

Keep On Breathin' On

Infographic Description and Text:

An infographic titled “Keep On Breathin’ On” depicts data and quotes from Dear Julianna letters. An outline torso with lungs, airways and oxygen moving in/out is shown as the title banner. On the top left side of the banner is an open envelope with a letter partially exposed. There is a wheelchair user and heart on the letter with the words “Dear Julianna” in cursive writing above it. Four semi-circles in blue, orange, purple and red are below the title banner with text. Six quotes from the Dear Julianna letter submissions are also on the image. A small pair of pink lungs is pictured in the lower right corner.

The infographic reads: Keep On Breathin’ On 46 Dear Julianna letters specifically referenced trach or NIV support 20 trach users; 26 NIV users Age range: 13 – 71 Trach users state having their respiratory support for just a few months to 43 years. Trach and NIV users report a happy, full quality of life. They participate in work, are active in their communities, and have families of their own.

"I can breathe through my neck! It doesn't hurt at all, and the best thing is: Now I can talk or sing for hours without getting tired." -Sarah Glerup, Communication and Disability Advisor "At nighttime, I have a machine called a ventilator, which gets connected to my trach. Since I got this machine, I feel so much better. I also have a suction machine and when I’m sick, I can put a small tube in the trach to pull out the secretions. It doesn’t hurt anything like suctioning through your nose.” –T.K. Small, Attorney

"I also have a new hole in my neck called a tracheotomy which will help me breathe. But I don’t mind these new [procedures]. As long as I get to live, laugh and love for many years to come, I will be happy." -Greg Smith, Motivational Speaker

"I have two little granddaughters. They like very much to look at my breathing machine on the back of my chair. When the oldest one was 2 years old, she loved to touch my breathing machine and see if she could turn on its lights. She often asks me to go for at walk with her. Then I drive my powerchair and she walks beside me telling about all the flowers we are seeing." -Jan Jakobsen, Executive Director

"I have to see a lot of doctors and at night I wear a mask that hooks into a machine that helps me breathe. The doctors and the machine help keep me healthy and feeling good. It took me a long time to get used to the machine, but now it feels good and I use it every night." –Dina Abramson, Librarian

"The truth is you can have a good and active life with a breathing machine!" -Camilla-Kenya Julendal, Secretary

NIV – Noninvasive Ventilation – respiratory support provided through a facial or nasal mask, or a sip mouthpiece.

nmdunited.org

dearjulianna.com

Information Compiled by Kendra Scalia / Infographic Created by Kittylegs Design

Dear Julianna,

My name is Ann, and I’m from Minnesota. I have CMT and doctors aren’t sure what type I have. I’m 25 years old, recently graduated from law school, have a job I love, and live in an apartment by myself. I also use a power wheelchair full time, wear leg braces, employ personal care assistants to help me live my life, and use a BiPAP machine to help me breathe. I spent a lot of time in the hospital when I was younger, and it was hard, but I want to let you and other children with neuromuscular diseases know that it will get better.

I’m the only one with CMT in my family. When I was diagnosed, my parents had no idea what would happen. They did the best they could, and as I grew up, they became relentless advocates for me. Growing up was hard for all of us. Every time I lost another function, like walking, preparing my own meals, or even washing my hair, we mourned. But my parents always expected the most from me, so I adopted with the help of family, friends, and technology.

Adapting has not always been easy. There have been times where my CMT has made me want to give up. When I was younger, I had a very bad case of pneumonia and was hospitalized for over a week. After the hospitalization, I lost a lot of function. I couldn’t swim on my own anymore, and I almost drowned trying. I couldn’t breathe on my own at night, and I had to start using a BiPAP breathing machine. I was so sad.

As most people know, CMT doesn’t usually affect breathing, and my parents and I were scared for the future. I didn’t want to lose any more function, and I was sick of trying to adapt. One day I had a conversation with my mom I will never forget. We were driving into town and talking about what would happen if I was hospitalized with pneumonia again. My mom said doctors told her I might have become ventilated and use an invasive breathing system. I didn’t know anyone with a vent, but I knew that’s not what I wanted. I made her promise that if that happened, she wouldn’t let them ventilate me. I knew the outcome of what would happen if I refused ventilation when I needed it.

I didn’t get pneumonia again after that, and I’m so thankful. In the years since that conversation happened, I have met so many people who use ventilation living fulfilling and happy lives. If I got pneumonia now and needed ventilation, I wouldn’t hesitate. Now that I’ve grown up, I know that life is hard, but you just have to keep moving forward and adapting. I wish I would have known more people with severe disabilities when I was younger, so I wouldn’t have been afraid of the future.

I’m only 25 years old, and still have a lot of learning left to do, but I know that one of the major problems for people with disability is low expectations. I used to have low expectations for myself, and a lot of people who knew me also had low expectations. None of my neighbors thought I would be able to go to college, but I moved away and have lived independently since. My parents didn’t think I would be able to move out of state, but I moved to DC for a summer internship. I didn’t think I would ever be able to drive a vehicle, but I took lessons in an adapted van and passed my driver’s license test.

I know my disease is incurable, but I have stopped focusing on that, and instead focus on living my best life and contributing to my society. I used to apologize for my wheelchair, but now I understand everyone has some form of “disability,” and we all need to be more accommodating. I empathize with children with disabilities, and I wish I could promise everything will be okay. There will be difficulties. While adversity can’t strengthen our muscles, it strengthens our spirits.

Image descriptions: 1) Ann with her 4-H show goat and scooter attachment that her dad built. 2) Ann with her likeness made out of a 90 pound block of butter the year she was a Princess Kay of the Milky Way finalist at the Minnesota State Fair. 3) Ann and her sister at Mount Vernon near DC. Ann is sitting in her wheelchair. Her sister is standing next to her. A beautiful mansion-type museum is behind them. 4) Ann in her cap and gown at her law school graduation.

Dear Julianna,

My name is Brad Williams.  I’m 53 years old and have limb-girdle muscular dystrophy.  LGMD is hereditary, which means I’ve had it all of my life.  But until I was 18 I didn’t have any symptoms of muscle weakness, and by all appearances was completely healthy.  I realize this is different from your life experience and those of many others who have written letters, who have had muscle weakness from birth or starting at a young age.  But I think it illustrates an important point: none of us knows how our life is going to turn out in terms of our health.  Someone can appear to be completely healthy, as I was as a child and teenager, but turn out to have a serious illness (in my case two serious illnesses, as I also have Type 1 diabetes).  Or they can be given a very poor prognosis as a young child, as many previous letter writers were, yet greatly exceed anyone’s expectations in lifespan, quality of life, and in their accomplishments.

None of us know how our lives will turn out, but in order to make the most of our lives I think the following things are important.  First, to believe that our lives and our accomplishments have value, in spite of our disabilities and health problems.  Secondly, to believe in our ability to overcome obstacles, and that we get out of life what we put into it.  Life isn’t always easy, even for many people who don’t have disabilities, but I believe living it in the best way we can and striving to achieve goals is always worthwhile.

Since I began having symptoms of MD I continued my studies for many years, and eventually became a scientist.  The subject I majored in in college is physics—Steven Hawking is one of the world’s most famous and respected physicists; he has ALS which is also a neuromuscular disease.  Many scientists are glad that Hawking has continued his research and made many amazing discoveries, and not let his disability stop his career.  In the last year, I moved across the country to start a new job for a foundation that sponsors research on my particular form of muscular dystrophy.  I’m very happy that I have this opportunity to be involved in research to find treatments for this disease, and also to help other patients find a diagnosis if their doctors don’t know what disease they have.

Most importantly, I want other people with muscular dystrophy to know that they aren’t alone, that there are other people out there with MD who are living successful lives, and can provide help, advice, and encouragement.  I had symptoms of MD for almost 20 years before I ever met another person with the same disease, and in some ways that was the hardest thing.  I don’t want anyone with MD to feel alone, and neither do any of the other people who have written letters before me.  We are all part of a community, and helping each other will make all of our lives more meaningful and fulfilling.  I’m not an especially amazing person living with MD by any means.  I have met many patients with different types of MD and different life experiences, who are all amazing in their own unique ways.  You have something amazing and special to offer the world, Julianna, and we can’t wait to see what that will be!

Photo descriptions: 1. Brad smiling sitting in his wheelchair in a khaki jacket and blue designed polo shirt at the office of the Jain Foundation, where he works as Director of Research and Advanced Diagnostics.  The Jain Foundation supports research in Brad’s form of MD, LGMD2B. Behind him are various pictures about LGMD2B/Dysferlinopathy 2. Brad goes “snow-wheeling” with his brother in the mountains of California (in July!). Brad is in a specialized wheelchair to move around in the snow wearing a blue button up shirt, khakis, black shoes, and a blue hat and glasses. His brother is next to him in black shirt, shorts, sunglasses, and flip flops. The are both in the snow smiling.

See Joey's letter at http://goo.gl/jboFU9

Image descriptions: White background with a picture of Joey sitting in his power wheelchair that is controlled with his mouth. He is wearing a long-sleeved shirt and shorts. His trache tube is visible. Next to Joey's pictures is a blue quote bubble that says, "Even though I have muscular dystrophy, I have a great life." Joey Weber #LivingWithNMD www.dearjulianna.com www.nmdunited.org

"Every life is made up of good and bad things.... The good things don’t always soften the bad, but equally, the bad things don’t have to spoil the good or make them unimportant." See Lucy's letter at http://goo.gl/wSFajg

Photo caption: Picture of the sky over an ocean in the background. In the foreground is a picture bubble with Lucy on the right, and her friend on the left, at a rock music festival. Both are in their power wheelchairs smiling. There is a concert stage behind them. In black font is the quote, "Every life is made up of good and bad things.... The good things don’t always soften the bad, but equally, the bad things don’t have to spoil the good or make them unimportant." -Lucy #LivingWithNMD www.nmdunited.org www.dearjulianna.com

"Sometimes the worst things are the best things." See Chelsea's letter at http://goo.gl/u6QAz0

Photo description: background with a purple flower with the quote, "Sometimes the worst things are the best things." Chelsea #LivingWithNMD dearjulianna.com nmdunited.org

Everyone has a cheering squad! See Brittany's letter at http://goo.gl/C7Aht3 #wednesdaywisdom

Photo Description: Picture of a pink flower in the background. In purple cursive font it says, "You have so many people who believe in you." Brittany Roberts #WednesdayWisdom #LivingWithNMD www.dearjulianna.com www.nmdunited.org

"There will be difficulties, but everyone with life has hardships." Dayniah Manderson's words are so true for everyone. Read her insightful letter once more at http://goo.gl/PaKfkO

Photo description: Purple background with white border design around a picture of Dayniah in her wheelchair smiling in a white blouse, jewelry, and glasses. Her daughter is in the background in a white shirt and floral skirt smiling. In the purple background it says in a white font "There will be difficulties, but everyone with life has hardships." Dayniah ‪#‎LivinfWithNMD‬ dearjulianna.com nmdunited.org

On Friday January 8th, Sarah Glerup, age 30, wrote history when she auditioned at Danish X Factor 2016 and got three times yes from the judges without them ever realizing she wasn't breathing on her own. Sarah is an active member of the American based NMD United, an organization for adults with neuromuscular disorders, and a co-founder of the campaign "Dear Julianna" intended to spread the message that active adulthood is possible for children with Muscular Dystrophy. Sarah herself was born with a form of Muscular Dystrophy which by 2013 had progressed to a point where she could no longer breathe sufficiently on her own. She got a tracheostomy (a small hole in her throat) and has since then been on assisted ventilation around the clock. Her trache and ventilator, however, did not prevent her from participating in a singing contest on the same terms as everyone else. And she thereby proved leading doctors around the world wrong when it comes to life with a trache. The dominant point of view among American doctors is that a trache and vent ruin's a person's speech and equals a very poor quality of life. The same bias against tracheostomys and ventilators is shared by Dr. John Bach, Professor at Rutgers-New Jersey Medical School, who is considered the most prominent expert when it comes to assisted ventilation for, among others, patients with Muscular Dystrophy. "In general, virtually nobody who can speak should ever recieve a tracheostomy tube because of muscle weakness. And those who have them should consider having them removed," says Dr. Bach (his official webpage). However, through her performance on The X Factor Sarah has efficiently debunked the myth that a tracheostomy and ventilator hinders speech. This can potentially save lives of children and adults alike who have hitherto often made decisions regarding traches based on wrong information and chosen heaven over a healthy, active life with a trache. With the right care and ventilator settings people with traches can not only speak - they can sing!

Dear Julianna,

My name is Angela and I’m 22 years old. I know 22 seems really old, but I think we still have a lot in common! I heard you love Disney princesses- even though I’m not a little 5 year old girl like you anymore I still love them too. Besides our love for Disney and the color pink, I also have a form of muscular dystrophy just like you. I’ve heard you are quite the special young lady and a beautiful soul, and so brave too! I understand how you don’t want to go to the hospital - all the scary sounds and machines isn’t any fun.  I was born with SEPN1 congenital myopathy, a type of muscular dystrophy that causes moderate weakness in all my muscles, particularly my spinal muscles.

Just like you, my lungs are very weak and anytime I get a cold, I have to be careful it doesn’t turn into pneumonia- which it can very quickly. When I was 12 years old I had a cold that turned into pneumonia and doctors had to hook me up to a machine that breathed for me because my lungs and small body were too weak. I was really sick in the hospital for a long time. From then on, I had to sleep with a machine that pushes air into my lungs and helps me breathe easier- I bet you have a machine like that too! In 7th grade I have to have spinal fusion surgery because my spine was so badly curved it was crushing my lungs and was very painful. It limited my mobility which was already pretty limited and I had to re-teach my body and brain to work together gain.

I know that not having your muscles work is really hard and makes you really tired easily. I just want you to know that your life matters and the gifts that God gave you mean something. I know you may be frustrated and confused with God as to why to have to go through this suffering, but He loves you so much. I know it’s hard Julianna, but keep fighting as hard as you can. Even though God made you sick, He has a plan and everything is for a reason. I know it may not seem like it at times, but everyone has a purpose and you were created in God’s image with a purpose. You are significant and your life has meaning.

There are so many good things to look forward to in life- even with MD! I’ve gone camping, graduated from high school, swam with dolphins, met the best friends in the world, completed multiple summer research internships, and I’m now currently a senior at Gonzaga University in Spokane, WA and will be graduating in May. I hope to get my PhD. in clinical psychology to counsel others with a disability. Living with this physical disability has given me first-hand knowledge of how society interacts with people who are “different” and it has made me more conscious of how we are perceived by others. I use a mobility scooter to navigate my college campus and I often need help with certain physical tasks. By asking for assistance, I am building friendships, trust, loyalty, and respect with those who do help, and in turn, they feel connected and supportive. They are truly living with me, and do not feel separate in the worlds we live in. No doubt, living with MD has been quite a challenge. However, this disease has also allowed me to be more aware of my abilities. My abilities show I am determined and capable of utilizing my graduate education to improve the lives of people - to inspire others to push themselves, just as I have pushed myself.

Living with muscular dystrophy has been very hard and there have been times when I’ve been so angry with God. You know what though? Even though it’s been really hard to be sick and have weak muscles, I know that the best is yet to come. You are loved so much by God, your family, and even though we’ve never met, by me. Keep on fighting and don’t forget you are loved little one.

Sincerely, Angela Maccarrone, 22

Picture 1: Angela with her mom Judy hiking in the Olympic National Park in WA. Angela is sitting in her scooter and her mom is leaning in next to her.

Picture 2: Angela and friends at a Gonzaga University basketball game. They are wearing red and white with blue face paint.

Picture 3: Angela and friends wearing white caps and gowns for their high school graduation.

Picture 4: Angela and friends participating in the MDA Muscle Walk in Spokane. Angela is sitting in her scooter with her friends on either side of her. It is a beautiful sunny day and a bridge is pictured in the background.

Dear Julianna,

My name is Lauren Taylor and I am 18 years old (soon to be 19 on December 31st!). I have Congenital Muscular Dystrophy with Merosin Deficiency. I was diagnosed at the age of one year when my mother noticed I was not reaching my normal milestones as a baby. I find myself lucky to have the form of Muscular Dystrophy that I do because it is not degenerative. Honestly, I find that this disability is something of a blessing in a very trivial disguise.

On the one hand, yes, my disease is limiting- I can not stand, or walk or really lift anything more than one pound. But that is not the way to go about living any life you’ve been given! You focus on the positives and that makes it easier and easier to smile. When I was younger, I didn’t really feel any different than other kids because I was light as a feather and people could just pick me up like a sack of potatoes and throw me around. I loved getting on the floor and scooting around! In fact, at my Aunt's wedding, I had every kid scooting around on the floor with me because they thought it was cool and wanted to be like me! Unfortunately, my happy positive outlook on life changed as I got older because as I got heavier, my muscles did not get stronger like everyone else’s.

I had to have scoliosis surgery in the 7th grade because my spine was so curved that soon it would crush my lungs. Hearing that I would have to have the surgery was the hardest thing I ever had to hear. It changed my whole world. On top of everything, it limited my already-limited mobility by a lot. When I was in the hospital for recovery, I apparently requested to die. That is all I kept saying to my dad (I don’t remember requesting this, as the whole experience was very traumatic), but he refused to hear my request. This was the start to my journey of accepting my new life with a stick up my back.

Yes, I had to learn how to do things over again, but you know what? I did it! I didn’t give up and accept defeat. I didn’t stay in bed and wallow in self pity because of my disability. Eventually, I could see the world in a whole different perspective because of my disability. I learned that my disability has brought me so many opportunities that I never would have had if I was able bodied, like my amazing Make-A-Wish trip to Australia! I also learned that my disability is sort of like a tool that weeds out the toxic people that you do not need in your life. When you have a disability, you get to see who is really your friend because they are the people who go out of their way to involve you in their lives. The not-so-great people leave you in the dust, no matter how nice they are to your face.

I love my life, even if it has its limitations. I go to college at the University of North Texas, where I live in my own apartment with my attendant. (How’s that for living independently at age 18?! Ha!) I do all kinds of things like fishing and hunting. I love crafting and painting! Reading is a huge passion of mine (Harry Potter is quite literally my life. My entire room is 100% all Harry Potter decor from the bed spread, to the closet, to the walls!) I have a few select, but amazing friends who are always up for anything. I could not be happier!

So to everyone reading this, I want you to know that no matter how down your life seems right now, it will always get better! Just like a bow and arrow, you pull the arrow backwards first, before it shoots forward. You just have to fill your life with the right people who will help you through it - moms, dads, siblings, friends from all over. You have so much to live for and so much to give to this world. I promise you are more than just a lump in a chair. You can do so much while sitting down! You just have to find out how!!

Thanks a million and stay strong, Lauren Taylor

Image Descriptions: 1) Lauren playing adaptive hockey with friends as a young girl. She sits in a purple manual wheelchair. A group of mostly young men on her team surround her in their wheelchairs. They are all holding wooden hockey sticks. 2) Lauren as a young adult with two friends. She is a grown-up playing adaptive hockey. They are all sitting in power wheelchairs in front of the hockey goal. Lauren has on a college t-shirt for the University of North Texas. 3) A Harry Potter collage that Lauren made. 4) Lauren getting a hug and a kiss from a Kangaroo in Australia. She's sitting in her power wheelchair and the Kangaroo's arms are on her lap. Lauren is smiling. 5) Lauren is being pulled by a motorboat on the water. She is adaptive water skiing in a wheelchair.

Dear Julianna,

I hope this letter finds you well and happy. My name is Racquel (sounds like Ruh-kell), I’m 33 years-old, and I have an unknown form of muscular dystrophy. Julianna, I can’t say I know exactly what you’re going through because I don’t. My diagnosis didn’t come until I was 11 years-old and I received my first wheelchair when I was fourteen. But my condition has progressed a lot since then. Let me tell you a little bit about some of the cool things that help me out everyday, though.

For my wheelchair I use a mini-joystick. It’s a lot easier to use than a regular joystick! As long as someone sets my arm in the right spot, I only need to use my thumb to drive. If you’re having a hard time driving your chair, maybe a mini-joystick could help you as well. There are many other ways to drive a wheelchair, though, like with your head or eyes even. I hope your parents and the people who made your chair will do some research to get you going on your own again. It’s so very important for you to have this independence because it will help keep your spirits up, which, in turn, helps your body stay healthy. If your parents want to, I can do some research for you with a little bit of information!

Another thing I use is a portable ventilator with a mouthpiece to help me breathe wherever I go. When I first got it, one of my attendants said it looked like Wall-E from the Disney movie. Have you seen that movie? It’s one of my favorites, so ever since then, my ventilator has been called Wall-E. I like to think my Wall-E is his own character. Sometimes I dress up his tubing when I’m going somewhere special. Like, when I ran for Ms. Wheelchair Texas, I was in a pretty dress so I thought my Wall-E needed to wear a bow tie! Everybody thought he was cute. :-)

The coolest things I use, though, are what help me to live comfortably and independently with my flatmate. I have a device that allows me to operate my lights, fan, space heater, TV, and Blu-ray player with just my voice! Also, I control my computer with just my eyes! Can you believe that? It’s so amazing what adaptive technologies we have available these days! Who knows what will be available when you’re my age? Maybe our chairs will be able to float up and down stairs! (If someone eventually invents that, remember you heard it from me first, okay?)

Julianna, I just wanted to tell you about some of the things I use so that you and your parents can discover what neat things are available to you. I hope you and your family have the happiest of holidays and for lots of good things to come your way!

With lots of love, Racquel

Photo descriptions: 1. Racquel on a vacation cruise in Mexico. She is smiling in her wheelchair with a white fedora hat on with a monkey smiling sitting on top of her hat waving. 2. Racquel in her wheelchair in a blue formal dress, diamond necklace and earrings smiling in front of the Ms. Wheelchair Texas 2015 stage in Houston, TX. Her ventilator “Wall-E” is visible and dressed up in a black bow tie. The stage behind her displays a state of Texas logo with the Texas flag inside it and hearts to celebrate Valentines Day. 3. Racquel at Painting with a Twist in her wheelchair painting a picture of dandelions in a field using a paint brush in her mouth to paint. Her ventilator Wall-E” is visible. 4. Racquel and her friend displaying their paintings of dandelions in a field from Painting with a Twist. They are both in their wheelchairs smiling and Racquel’s ventilator “Wall-E” is visible.

Dear Juliana,

My name is Donna and I also have Muscular Dystrophy. I had a rough start in life. I was born a month early, which meant I was pretty small and during birth my hip broke and my knees were backwards, so I had to spend a month in the hospital. My parents didn't know I had Muscular Dystrophy until I was a few years old.

The doctors told my parents and me that I would not live to be very old. That was very upsetting to hear especially for my Mom, but I am now 42 years old. I think the doctors don't always know just how tough we can be. I too have been told since I was young that the next time I get sick I can go to Heaven but I just try to prevent it by getting a flu and pneumonia shot and stay away from anyone who is sick.

I know hospitals are scary and nobody ever wants to go, but sometimes we have to do things that are scary. I'm glad my Mom and doctors made all the decisions they did because it meant I got to live a much healthier, happier and longer life than any of us thought possible.

Even though I had to have surgeries, stay in the hospital several times, and see the doctors a lot over the years I have had a wonderful life. I got to go to school, go to MDA camp (where I made lots of friends who I am still friends with 30 years later), travel, and meet the love of my life. I don't have kids, but I do have a dog named Bear.  My hope for you is to be able to go to school, MDA camp, make lots of friends and wonderful memories, you get to fall in love, and do everything you dream of doing. Please don't let anyone tell you that you can't do something because you seem pretty tough to me and I'd love to see you prove everyone wrong.

Donna

Image Descriptions: 1) Donna as a newborn in the hospital laying down with casts on her legs after the doctor fixed her knees 2) Donna with her camp counselor dressed up for a Halloween dance her first year at MDA camp. Donna is in her wheelchair dressed up as a witch in her wheelchair, and her camp counselor is dressed as a clown with white face paint, red nose, and a colorful wig. They are both smiling, 3) Donna in her power wheelchair wearing a green t-shirt, jeans, and sunglasses as she is smiling and taking her 115 pound chocolate Labrador for a walk.

Dear Julianna,

Let me start by saying “Welcome!” You may not have realized it yet, but it is a wonderful thing to be part of the disability community. I know there are many people with disabilities who are sharing their experiences, encouragement and love with you through these letters. That is just the tip of the iceberg in terms of the strength and support the disability community has to offer. Being able to connect with other people with disabilities, something called peer mentoring, is an important part of figuring out how you want to live a great life.

Like you, I have CMT. I’m the second of three generations to have CMT. My dad had it, and both of my kids have it. Like in your family, we each have a different mobility issues. I started using leg braces in high school, then crutches in my 20s. Although I’d also been using a wheelchair for sports and travel since my 20s, I started using it more full time when I became a mom. It helps to be speedy when you’re chasing a toddler. My kids have loved zooming on my lap since they were babies. Even though they are 8 and 10 now, they still think it is fun.

Since my kids have CMT too, we participate in lots of adaptive sports. As a family, we’ve tried sled hockey, skiing, hand cycling, and other fun sports. Although they both walk for daily mobility, my kids have sport wheelchairs so they can play tennis with Northwest Wheelchair Tennis Association. Did you know wheelchair tennis is a great sport for people who use manual or power wheelchairs? Maybe you’d like to join us sometime?! There are lots of kids and adults who have all different types of mobility impairments. They’d love to meet you. I know that having friends your age who know what it is like to live with a disability is an important thing.

When I was 13, I had spine surgery to correct my scoliosis. I also had leg surgery when I was 17. I was so lucky to have a great group of friends I’d met at MDA camp to help me through those times. Hospitals can feel a bit scary and lonely at times. When I had my spine surgery, I spent hours and hours imagining all the things I would do when I got out of the hospital. I wanted to fly a plane, travel the world, and ride horses. I thought my easiest goal would be to fly a plane so I started saving my allowance to pay for pilot’s lessons when I was old enough. Funny thing is that although I never got a pilot’s license, my dream of adventure did turn into reality.

I took adaptive horseback riding lessons for five years, and my teacher had a disability that was very similar to ours. She had been the very first disabled mounted park ranger at the Grand Canyon. That all happened because someone told her “no!” Talk about an amazing advocate and perfect peer mentor for me! I have also been scuba diving, earned a red belt in Taekwondo, and traveled in nine countries and 32 states. Part of my international travel was with Mobility International USA (MIUSA). I’ve meet so many wonderful people with all different types of disabilities on MIUSA exchange programs. My first MIUSA exchange was a youth leadership program for teens and young adults with disabilities from 14 different countries. It was an amazing experience, and it really helped me focus my college and career goals on disability rights.

Since earning a master’s degree, I’ve worked for an Independent Living Center in Arizona where I helped youth with disabilities learn about their educational and employment rights. I was the director of a center in Oregon that helped parents of children with disabilities learn about their child’s educational rights. I’ve done other university research and freelance writing to create different curriculum materials for students with and without disabilities. Now, I’m working with my kids as they start their own website. They want to help other kids with disabilities learn about their rights and all the opportunities that are out there for kids with all different types of disabilities. Imagine that, they want to be writers and self-advocates too!

I know that living with a disability has its frustrating moments, but there are also lots of wonderful moments to be found when you share your experiences with others in the disability community. There are many of us out here who are ready to be mentors to you and your family. I hope that we have the opportunity to meet someday.

Jill

Image descriptions: 1) Jill and exchange group friends are pictured during a climb on the pyramid of the sun in Teotihuacan, Mexico. Jill (in pink shirt and wearing leg braces) and a friend are seated on the steps as they “butt” their way back down. Another group of five is in the background at a higher point. Four are standing and walking down the steps. The fifth person, a young woman with hemiplegia, is belly-crawling her way down the steps.

2) Jill and her son and daughter are sitting in hockey sleds on an ice rink. They are wearing hockey helmets, pads, and gloves and holding sticks. Jill’s husband is kneeling behind them.

3) Jill, using a manual wheelchair, is at a garden center with her daughter and a girl using a manual wheelchair. The girl is a friend from wheelchair tennis. Jill’s daughter is holding a doll and standing behind her friend.

4)Jill and her son are both using manual wheelchairs. They are dressed in coats and “Turkey Trot 5K” t-shirts. The picture shows them at the half-way point of the race where they decided to stop. To date, this shows Jill’s third of four 5K races, and her son’s first of two.

Dear Julianna,

My name is Stacy.  I am 36 years old, married to the love of my life, and I just had a baby boy that we named Jude.  I have an undergraduate and law degree from the University of Texas, and although I practiced law for 6 years and worked for a federal judge, I quit all that to start my own international company, designing a vehicle made for wheelchair users - the Kenguru.  Through my company, I was able to meet President Obama, and we have been featured in all kinds of impressive publications like TIME Magazine, the New York Times, and Oprah Magazine.  

I lived alone in an awesome loft apartment in downtown Austin, TX during my twenties, but I am now a home owner and my three dogs love having a huge backyard to run in.  My husband and I love to garden and enjoy the delicious fruit of our labor.  I am also a published author, and am a public speaker.  I have traveled to several countries, both for work and pleasure, and I love to see different parts of the world, though I prefer to avoid any place cold!  Oh, and I was also born with a neuromuscular disease that has prevented me from ever walking.  

I have used a wheelchair my whole life, and have had to deal with more serious illnesses and hospital stays than most of my friends.  Some people think that is a sad life to live, but I don't agree.  Being different in this way, and being aware of how precious a gift life is, has given me a unique perspective that I would never trade.  It means that I have had much richer relationships than the average person; that the romantic love I have found has a depth not experienced by many; and I appreciate the good and bad life has to offer in a way lost on most people.  

So although I can't walk, and I rely on a team of caregivers to help me every single day, and I have to be very careful with my health, none of this outweighs the great benefits that are, well, what it means to be me.  Besides, there are no guarantees for anyone, that is what it means to be alive.  So enjoy it!!

Stacy Zoern Goad  

Image Descriptions: 1) Stacy is a small child and she is wearing leg braces and holding on to a bench. Her mom has her arm around her and is smiling for the camera. Stacy writes: "With my mom as a child before I was diagnosed.  They did not know why I wasn't standing, so the doctors put me in leg braces, but they were too heavy for me to really use."

2) Sitting in a power wheelchair and wearing a formal gown, Stacy's friend, who is also wearing a gown, stands next to her. Stacy writes: "With my junior high and high school best friend (we are still close!), right after we graduated high school.  We went on a cruise with my whole family."

4) President Obama reaches out to shake Stacy's hand as she sits elevated in her power wheelchair. Stacy is giving a presentation about Kanguru cars, a company she founded for people with disabilities.

5) Stacy and her husband floating in the ocean on their honeymoon in Costa Rica. Tree covered hills are in the background. Her husband is holding a tropical drink and Stacy is being held in his arms with a yellow floaty around her neck.

6) Stacy is 8 months pregnant with her baby boy, Jude. She's wearing a two piece bathing suit that exposes her belly and her husband is kissing it. She's looking down at him and smiling big. Stacy writes: "We had my husband tested and since he was not a carrier of SMA, we knew we would have a healthy baby!"

Dear Julianna,

My name is Dina, and I live in Texas. Like you, I have a disease that affects my muscles. I have read some of the letters that people have written to you, and I hope you know now that people can have great, happy lives, even if they have a disability. You can grow up, go to college, get a job, get married, raise a family, and travel. You might have to go to the hospital sometimes, and you might need special equipment, but all of that can help you feel better and live a good and long life.

I have a family I love very much, and very dear friends. I work as a librarian and share an apartment with a close friend. I go out of town by myself on a bus. I have to see a lot of doctors, and at night I wear a mask that hooks into a machine that helps me breathe. The doctors and the machine help keep me healthy and feeling good. It took me a long time to get used to the machine, but now it feels good and I use it every night.

I hope you are feeling good, and that you like all these letters and pictures that people are sending you. And I hope you and your family have a great holiday!

Dina

Image Description: Dina is pictured in front of lots of library books. She has long hair past her shoulders, and is wearing a pretty patterned top with a necklace. She's smiling big.