My Weakness Is His Strength: Fighting Muscular Dystrophy

INTRODUCTION TO MUSCULAR DYSTROPHY

My name is Abby and I am 16 years old and a sophomore in high school. I have a rare form of Muscular Dystrophy. Muscle Dystrophy is when your muscles get weaker as you age. I have a story just like everyone else, and I hope that by telling it I will inspire others to be themselves, and to not be ashamed of who God has made them.

Abby McCage

LIVING WITH MUSCULAR DYSTROPHY IN MIDDLE SCHOOL

I have always hated myself. I would find the littlest things about myself that I hated, and I would become depressed because I thought I was just so ugly. In middle school I was so ashamed of who I was. I wouldn’t tell anyone that I had Muscular Dystrophy. It’s not like I could hide it, but I would just avoid it. When people asked me questions of why I couldn’t do something, I would just say “I don’t know” and move on. As of now I use a wheelchair, but that’s not because I have gotten weaker, it’s just that I’m not as ashamed of myself as I used to be. I would force myself to walk in middle school because I didn’t want people to judge me or look down on me in any way. People were still very rude, but now I look back and see how much stronger it has made me.

CAMP FOR KIDS WITH MUSCULAR DYSTROPHY

Through the hard times in middle school I have always had MDA camp, which is one reason why I am who I am today. I saw all these kids at camp, and they were so happy to be themselves and they were unashamed of who they are even with their circumstances. It made me question myself “why am I ashamed to be who God has made me to be?” Every time I went to MDA camp, I grew as a person mentally and physically. I have met so many great friends and I myself was inspired by so many people. I’m very excited to be blessed with two more years to experience the great adventures, and meet others with Muscular Dystrophy.

Abby McCage

HOMESCHOOLED DUE TO MUSCULAR DYSTROPHY

I was taken out of public school my 8th grade year, which was GREAT. I had so much anxiety and depression being in middle school that I really needed a break, and God obviously took care of me. I was homeschooled from 8th grade through my freshmen year of high school, which were the years I grew the most in my faith with Jesus Christ. In homeschool, it was difficult to always be at home and never leave the house. I’m not an extrovert, but I also didn’t want to always stay at home. In my free time when I felt lonely, I just prayed, read my bible, and found inner peace that is unexplainable. After being homeschooled for two years my family was no longer able to continue, so I knew I had to go back to the one place that gave me very low esteem. Not only was I going back, but God had called for me to use a wheelchair.

MY CURRENT LIFE WITH MUSCULAR DYSTROPHY

I was very nervous about going to high school using a wheelchair. I had to fully trust God and his plan for my life. I was so scared that people would judge me for being myself, and I thought that I would have no friends. I prayed hard and trusted God completely. I am now very thankful that I trusted him because I have made very good friends that embrace me for myself and the doors have opened up for me to speak about Muscle Dystrophy, which is mind boggling because before I couldn’t even say those words without cringing- now I’m speaking about it!

Abby McCage

BE YOURSELF: MUSCULAR DYSTROPHY HAS MADE ME A STRONGER PERSON

I’m not going to sit here and say that I am completely confident in myself because I’d be lying. However, I can tell you that Muscular Dystrophy has made me stronger as a person. It has taught me not to care what others think, to be my best self, and most of all to trust GOD completely because without him I wouldn’t be writing this. I would probably be in a dark hole full of hate, anxiety, and depression if it weren’t for God. He is my rock and the one who has turned my weakness into a strength.

He gives strength to the weary and increases the power of the weak. Isaiah 40:29

Follow me on Instagram: @godisstrength12

Abby Elizabeth McCage

About

16//Muscle dystrophy//Jesus lover//James 4:8.

One Pitch At A Time With A Robotic Hand

HOW DO I DO THIS?

When the sonographer looked at our baby girl in the womb and didn’t say anything about her right hand, we shoud have known. The doctor then came in and said that there was something wrong with her hand. He wasn’t sure what, but we could definitely see it on the ultrasound photos.

Hailey was born in 2010 and we didn’t know what to do, what to expect, or how to handle it. I thought about every single thing that I could’ve done wrong while pregnant, that could’ve caused this to happen. Hailey was born with a hand with a small palm, small thumb, small pinky, and missing 3 middle fingers. It looked like the hang loose or “shaka” sign from Hawaii. I’m from Hawaii so that’s what I compared it to. Our Pediatrician didn’t know what she had so he referred us to a Pediatric Orthopedic Doctor. This was all new to us.

Jordan Grace

While in the hospital, the photographer came by to take Hailey’s newborn photos and this was the defining moment for me, as her Mom. It was her first official photo and I did something that made me feel guilty. I covered her hand for the photo. I didn’t want people to see her hand. I felt so guilty about it. After that day, I told myself that I would never cover her hand ever again and that we would raise her to never be ashamed of her hand, to be proud, and to be independent. We never looked back from that day on.

A week later we found out that Hailey has Poland Syndrome and that there wasn’t anything I could’ve done to have caused it. This wasn’t hereditary and it just happened. She is missing her pectoral muscle on her right side as well as the limb difference in her hand.

THE ROBOTIC HAND

For the first few years of her life, Hailey, adapted and did what every other kid could do. We taught her to try before she asked for help. We taught her to be proud of who she is and it amazed us as she explained what she had to other kids.

When Hailey was 3 I saw a report about a robotic hand made with a 3D printer. I contacted the inventor and we soon realized that she was too young to be able to understand how to control it. I started the process when Hailey was 4 and went through some frustrating moments while trying to find someone to build this robotic hand. I almost gave up and then thought about contacting the local university, UNLV. I emailed the College of Engineering and found two professors who wanted to work with us.

Jordan Grace

Hailey received her first “Flexy Hand 2” in October 2014. It was absolutely amazing. She threw out the first pitch for the UNLV Rebel baseball team in March 2015. That grew into a bigger dream for Hailey since her big brother plays baseball and our family loved the Baltimore Orioles. She asked to throw out the first pitch for the Orioles. That dream came to fruition in August 2015. She has no fear. She goes through her day tackling every task and challenge that comes her way. UNLV continues to build her hands. She’s thrown out the first pitch for other minor league teams and again for UNLV. She has different themed hands and loves to show it to all of her friends. She played her first season of baseball in 2016, sometimes with her Flexy Hand or sometimes without.

Our little Hailey inspires us every day. This year she wants to dance Hula, and she’s hoping to throw out a first pitch for another major league team. She loves doing it. Most people would be nervous to walk in front of thousands of baseball fans, but not our little girl. She loves it!

Follow Hailey’s journey on Instagram: @haileys_hand

Yong Dawson

About

Mom of two amazing kids, photographer, and wife of a loving husband.

Living A Beautiful Life With Down Syndrome

OUR STORY

Our four year old started asking for a baby sister, and every night she would ask God to send her a baby sister during our family prayers. My husband and I began trying, we were ready to add a little one to complete our family. It wasn’t as easy as our first pregnancy. We tried for months, and the stress overwhelmed me. I was thinking maybe our family would not be able to grow. That sweet day came, and we were finally expecting. We were thrilled and sharing our news with everyone! We didn’t wait until the 12 weeks to share our great gift on the way with all our friends and family. Our Ana Maria would kiss my growing belly and share with us how much she already loved the baby. We would wait to find out if she was going to have a brother or a sister as she was a surprise herself.

Jordan Grace

DEALING WITH THE DIAGNOSIS OF DOWN SYNDROME

At 20 weeks, we drove to the lab to see our precious little miracle on the way. The car ride was filled with laughter and songs. While laying patiently to get all the official pictures, I kept chatting away with the technician who seemed quiet and focused. When she was finished she said she would be back in a little while with the doctor. Greg and Ana Maria came in and we waited patiently to see the baby again, the fun way this time. We had no idea our world was about to change; in that instant there would be a before and after in our lives. The doctor came in and told us the baby had a heart defect. Tears immediately burned down my cheeks and continued to flow down my shirt. Then I felt the room spinning, too much information I couldn’t retain, I stopped listening and began to worry. Would I lose the baby? Could I walk carefully enough to not fall and hurt the baby even more? I couldn’t breathe or speak. I’m sure I sobbed loud enough to scare my precious daughter, the big sister to be, who was so looking forward to having a baby to play with. My first words were “is it a boy or a girl?” We were having a baby girl, God had answered my little one’s prayers, but with conditions. Devastation filled my soul. I trembled as I excused myself, searching for the restroom, I wanted to erase what happened and begin anew. As the door shut behind me a horrible cry escaped me and I sobbed. I looked up and told God “no” I’m not sure if I yelled or whispered, but I felt betrayed. We were sent to the hospital for a fetal echocardiogram to see how severe her defect was.

The commute from lab to hospital was filled with silent cries and quiet fear. The only words that were spoken came out of my mouth “her name is Jordan Grace.” We had yet to decide on a name, so I felt in my heart this was her destined name. Our appointment went better than expected, the doctor spoke to us with confidence and reassurance letting us know she would need surgery, but that she would be ok. I’ve always been a faithful person, I knew we had to start praying for a miracle instantly. I began to contact friends and family to request prayers. One of my calls was to a dear friend who is a delivery nurse, with a shaky voice she mentioned that complete AVSD was correlated with Down syndrome. I fell to the ground with grief. I could not believe what I was hearing. DOWN SYNDROME? I felt my world falling apart. Sure enough, this second diagnosis was confirmed. We were having a baby with an extra chromosome who would have to have open heart surgery. My days were filled with tears. I went into a big dark hole I couldn’t seem to climb out of. I would scream “why” towards the ceiling thinking God was punishing me, us, and especially a precious now five year old who was longing for a sister to play with. Greg, my amazing family and dear friends carried me through the dark days, they would allow me to vent, feel and say what I needed to get through the day. Greg had so much faith, he would tell me that she would be perfect no matter what. I didn’t know anyone with Down syndrome, now I was going to be a mother to someone who I didn’t understand. As the days and months passed, I began to have more good days than bad.

Jordan Grace

JORDAN GRACE

On a beautiful day in February, the snow was beginning to melt and the sun was shining bright, I was advised by my doctor to go to the hospital for a check up. It was still almost three weeks until my due date, but I had a feeling something felt funny. As soon as I was checked by the nurse, she said I wasn’t leaving the hospital without a baby. The next few hours were filled with messages from my family and friends from all over. My family had booked tickets to come in a couple more weeks so they wouldn’t miss the birth. This was it, it was show time! This baby who would change our lives and become our after, would be here in moments. She entered the world by three gentle pushes in a matter of four minutes, peacefully. The doctor placed her on my chest as she looked to me as her soul connected to mine. I already loved her, but the way she looked at me, I knew then our world would be better than ok. Our family was indeed complete.

Everyone deals with diagnosis in their own way. I didn’t want to see or read anything about Down syndrome. I wanted to get to know Jordan Grace for her, not for her diagnosis. However, now I share her with the world and have connected with some incredible people who have been changed in a good way by knowing her. She brings us sweet sunshine, she lives every single moment to the fullest. She plays hard and loves even harder and deeply. The love she has for life and people is truly inspiring. We all should live the way she does. I couldn’t be more proud to be her mother.

Jordan Grace is the perfect sister for Ana Maria, our big girl’s dream came true, God did answer her prayers and ours, not what we were expecting, but even better than we imagined. If you have just been given a diagnosis of Down syndrome, please don’t let the professionals tell you how terrible your life will be. I was told that my daughter would be a burden, that she wouldn’t be able to do anything for herself, that she would end up in an institution. I was so weak and pained, I can’t imagine if I didn’t have faith and God on my side I would have believed the doctor and missed out on this precious little lady who shows us how to live in joyous ways we never knew.

Instagram @mommytor_az
Facebook.com/mommytor
Mommytor.blogspot.com

Maria & Jordan Grace

About

“Mommytor AZ” Mom to an incredible girl with down syndrome.

Tiny But Mighty: Living With Cerebral Palsy

ABOUT MAYA

This is Maya. She is four years old and lives her life with Cerebral Palsy like a boss..

Maya was born a micro preemie, weighing only 1lb. 10oz. at birth. To put that in perspective, that’s about the same weight as 4 containers of yogurt or 6 sticks of butter. Those first few weeks were the scariest. She was on the highest powered ventilator in the NICU, which made her whole tiny little body shake 24/7. Still, it wasn’t working, she was struggling and the doctors were concerned she might be one of the ones that wouldn’t make it. It was the most terrifying and heartbreaking time in our lives.

NOT GIVING UP

No one was giving up on this girl though. The doctors gave us a few options to see if we could get her to improve, one of those was to give her a high dose of steroids to help her lungs. There were risks, but we agreed. We wanted to give her the best chance at survival and any potential risks associated with the medication were more than worth it.

Yoav Gaon

BRINGING MAYA HOME

The steroids worked like magic. Within days of her first dose, she was off the ventilator and on CPAP (continuous positive airway pressure). Within another few weeks she was off CPAP and on nasal canualas. All in all, she breezed through the rest of her NICU stay. She came home after 87 days. We were elated and felt like we had “beaten the odds”. We brought home a perfectly healthy micro preemie who showed no signs that she wouldn’t be anything but 100% healthy.

WE NOTICED SOMETHING WAS “OFF”

At home everything was going great. Maya was thriving, reaching most of her milestones on time or even ahead of what was considered typical. She was bright, talkative, a good eater, etc.. Yet there was something “off.” We noticed Maya’s motor development wasn’t quite where it should be for her age. It took her a long time to sit up and crawl. And, there was something else, as Maya grew her legs seemed more spastic and tight.

Yoav Gaon

DIAGNOSIS: CEREBRAL PALSY (CP)

Our Early Intervention team was really on top of it. The home visitors recognized what was going on and urged us to speak with our doctors. Initially we were told that Maya just needed more time to “catch up,” but we knew that wasn’t true. We kept pushing her doctors for more answers. Finally, Maya had an MRI. The images of Maya’s brain showed that she had periventricular luekomalacia (PVL), also a known causal factor in children with Cerebral Palsy (CP). It was confirmed Maya had CP. It was both devastating and a relief to finally know. A relief to have a diagnosis, but devastating because we didn’t know what to expect for her future.

MAYA IS OUR TROOPER

It’s been 2 years since Maya’s diagnosis and we’re still learning and adjusting. Right now Maya does not stand or walk independently. She currently uses a walker to get around and soon will have a wheelchair for longer distances. Currently, she goes to physical therapy, occupational therapy, aqua therapy and hippotherapy weekly. She is a trooper. We are also considering a potentially life changing surgery call ‘selective dorsal rhizotomy’ within the next year.

Yoav Gaon

FIERCELY INDEPENDENT

For now, Maya is showing us the way. She is feisty, funny, caring, and smart. She likes babies, she tells the funniest stories, she loves to play with her big brothers and our three legged dog, Abby. Maya is fiercely independent and believes in herself. She knows she can do anything if she keeps trying. She never gives up, she never has.

CHANGING THE WORLD

Maya is going to change the world. She is going to change the world by changing people’s minds about what it means to live with a disability. We are so lucky to have a front row seat to this amazing life. We love our tiny girl with a big heart.

Follow Maya’s adventures on Instagram: @mightymissmaya

Maya and Mom

About

Mom to Maya, the strongest girl you will ever know! Maya may have Cerebral Palsy, but she is going to change the world!

Living A Colorful Life With A Rare Disease

Looking At The Glass Half Full Despite Having A Rare Disease

My name is Yoav. I am the co-founder of yoocan and the father to Erez, an amazing boy who was born with a rare disease and complex disability. When Erez was born, we didn’t know what to expect. The odds were against us and the doctors were pessimistic. We understood that we needed to focus on his quality of life rather than try to fix him through uncertain surgeries. Once we started looking at the glass half full and searching for his small accomplishments and positive strengths, his beautiful soul came out and also his abilities.

Yoav Gaon

Today, Erez learns in a high-functioning class in a special school. He is also a helpful carpenter to me and I see that this passion helps him develop his motor skills and enforces muscle use and cognitive understanding. This activity also helps him feel a sense of accomplishment each step of the way. You can see in the photos that we are building a chair. We take each day slowly with a consistent pace.

Yoav Gaon

Like Erez, there are over 1 billion people in the world living with some kind of cognitive or physical disability, striving to live a better, more inclusive life, and fulfill their dreams. There are solutions and opportunities around the world that can help, so no one feels alone. That is why we created yoocan! We invite you to share your experience and knowledge and take part in our global collaborative community.

Find out more about Erez on Instragram: @yoavgaon.

Yoav Gaon

About

Father to Noa, Asaf & Erez a special boy with a rare disease. Also, I am one of the co-founders of yoocan! Share with me your stories of empowerment & Ideas!