One of the very first things I looked for when my daughter was diagnosed was Hope. Making the rounds on the internet, I found precious little. But the two videos I found, I watched over and over, because it gave me hope that we would beat this. That Amy would grow up happy, and that she stood a chance of a life without limitations.
These are photos and videos from by families in the CPT community, and you can contact them for help and advice through the Facebook Support Group that I’m fortunate enough to be a member of. I hope these stories ease your heart, and show you that hope is out there,
no matter the outcome.
This is Gabby’s story. It was the very first video I found that gave me hope – and made me cry.
And here’s and update video, spoilers: She’s BRACELESS! In 2018, Gabby is a singer, actress, dancer and a senior at a Performing Arts Academy. Her dream is to be on Broadway, and she is well on her way!
This is Sylvie, and she is 5 years old. I’ll let her video speak for itself. In 2018, Sylvie has no pain and no limitations (other than no tackle football ). She wears a below the knee brace only when she leaves the house. Mom doesn’t think she needs it but Dr. Paley (and dad) are overly cautious!
This is Amit, and he is 16. He had 5 surgeries by the age of 11, when he made the very adult decision to have an amputation. His parents supported his decision, his story went viral, and he was finally set free. In 2018, Amit is thriving, and shares his passion for life by running interactive workshops at school about hard work and perseverance. Not only that, he travels the world raising awareness for disabilities, and plays wheelchair basketball with the Israel Junior National Team. This year, his team won the national championship in Israel! His dream? Participating in the Paralympics.
(The following video is in Hebrew, but you can kinda get the gist of what they’re saying. I sure wish I knew what some of the jokes were!)
This is Averie, and she is 11 years old. She had her right leg amputated at 2, and the first picture was taken less than 12 hours after her surgery! A couple years later she attended a gymnastics class, and at 5 took 2nd place in her first competition. In 2018, Averie is a National Champion, taking 3rd place on the balance beam at Nationals, inspiring others to turn their challenges into advantages, and dreaming of someday becoming an Olympian.
This is Skylar, and she is 5 years old. Wearing a brace is all she’s ever known since she was diagnosed at 4 months old. After several surgeries Skylar was able to join her first dance class last year at the age of 4 & she absolutely loves it! She has proven time and time again that she is unstoppable and won’t let her “special leg” slow her down. Among dancing, swimming is another favorite activity she enjoys weekly.
This is Joey, and he is 11 years old now and still loves to show off. His leg broke when he was 6 months old. The first orthopedic we took him to said, “You should go ahead and amputate now because that is where you will end up anyway”
They went to a different doctor at Shriners Hospital and he still has his leg and is doing well. In 2018, Joes spends his time with the Robotics Club, is on the Student Council at school, is in the band playing percussion instruments, and on top of that has nearly straight A’s!
This is Sienna, and she is 6 years old. She’s shown here riding her bike with her frame on, and her crutches hanging off the back. She and her sister also love to dress up and do ballet. The second picture was taken at home, and not long after Sienna started standing up and moving around with the frame on. In 2018, she is looking forward to her first dance concert next month, and mom is sure excited, and certain she will cry.
This is Ayden, and she is 11 years old. She was diagnosed at 8 months, and fractured shortly after at 10 months old. Her parents decided to brace her as long as possible, but by age 3, decided that amputation was the best way to improve her quality of life. Since then, she hasn’t slowed down! The first picture was at 4 years old. She was waiting for her new leg to be made, but T-ball couldn’t wait! Not much has changed, she’s busy rock climbing, attending summer camp, and doing all the things regular kids do – she truly has no limits.
This is Aria, and she is 9 years old. She was born with her tibia broken, as you can see from her x-ray. At 14 months old she had surgery where an external fixator was applied. She learned to walk in it only 2 months later! In 2018, Aria doesn’t even think about her leg, it’s just an non-issue. She hasn’t worn a brace in some time, and as she walks, runs, and has fun with her family, she doesn’t even think about it. I think that’s pretty amazing.