My disability - AMC (arthrogryposis multiplex congenita)

[@99able]

Please, share this video with anyone who has a child with AMC (or a similar disability) or who is disabled themselves. I really hope that my experiences could help people become more independent 🤗 thank you for watching!

[@kellyvelarde6236]

Are there videos of exercises as a new born? I’m currently pregnant and would love to know or see them?

[@99able]

@@kellyvelarde6236 Hi, I'm sorry but only videos we had were on old VHS cassettes and they do not work anymore. However, please do email me at [e-mail] and I'd love to maybe exchange WhatsApps or something and chat. I can get my parents to describe the exercises as they had to learn them as well to do them a few times a day at home with me

[@Lifewithyaana]

Hello, my baby has detected with AMC. I want to ask you did you had any respiratory issues along with muscle weakness??

[@99able]

@@Lifewithyaana Hi! Thank you for your comment. No, I never experienced any respiratory issues. AMC affects mostly my limbs.

[@Lifewithyaana]

@@99able thank you for replying ❤️

[@_Azzychan]

I've been learning about AMC through AMC Princess Ana's channel, Team AMC Ana. It's good to hear stories like yours and Ana's.

[@99able]

Thank you!

[@ifonlyseethrumyeyes8957]

Hi Ola! So nice to see you. I'm so impressed with your bravery. Your legs look great. My last surgery was 21 years ago, so things have changed a lot, but I was lucky to have great doctors. Walking is the best exercise, it keeps your muscles and your bones strong and it's never too late to start. Keep up the good work.

[@99able]

Thank you!

[@mysticamusic.official]

I'm so glad you are sharing your story, you will make a big difference in many lifes. Wishing you and your parents the best blessings :) all the dedication you all had for all those years have paid out :)

[@99able]

Thank you so much! ❤️

[@niamhoreilly3863]

You're incredible. Thank you

[@ninjamitcherz]

Thank you for making this video!

[@alicjaradzimska3488]

♥️♥️♥️♥️

[@vagabundood]

How do they straighten the arms and legs without cast ?

[@99able]

In my case they did it during surgeries and later I had casts for about 2-3 weeks just to keep the effects of surgeries and let everything heal inside

[@vagabundood]

@@99able thank you for the response just one last question how old where tou when they did your first surgeries ?

[@99able]

@@vagabundood I had my feet operated when I was 1 year old and my hands when I was 12/13. The doctors said that my feet should be operated just before I started walking so that I would exercise them while learning to walk and my hands were operated when I stopped growing

[@pemalhamu360]

My baby also has the same problem of AMC in her lower limbs. Now she is 4 months old. When she was born we didn't know how to deal with the situation. First of all it was very difficult to accept the fact that my baby is born not normal. We live in a small town n doctors out there said it is complicated n it can't be treated here. She has to be taken in a big hospital. But then she had a lot of pain in her lower limbs. It was very difficult to feed her. She used to cry so much even at the time of changing diapers. When we went to hospital for different test people used to ask me whether she wl b able to walk. Or didn't I knew when I was pregnant with her. I think those two questions used to kill me again n again. She was born on 18th of may during tat time there was much fear of covid 19. There was no flights, no trains to take her to a big hospital. Somehow I could manage to have video consultation with a good doctor n he told me to do the baby's exercise. It was only after two months we could meet the doctor. But I don't think he has handled such cases before bt yes he is trying has best n has knowledge of it. When I knew about her after five days of delivery I was shocked coz I never thought the case could b such severe. I didn't talk much or eat properly or even smile n waered thoughts came to me.. Bt as it is said time is the best healer now her treatment has started I m little relaxed. After seeing your video I feel so encouraged n thank you so much for sharing. If there is any suggestions for me please let me know. Coz till now I haven't met the right doctor who has experience in such cases. As looking at your photos my baby also has same pattern as yours bt only her lower limbs are affected. Once again thank you so much for sharing. God bless u.

[@99able]

Hi, thank you so much for sharing your story. I'm located in Europe so I only know doctors here but what I would advise you to do is to join Facebook groups about arthrogryposis. There's a lot of them and some have thousands of members who are amazing and very helpful and I'm sure you'll find someone who knows doctors and hospitals close to where you're located. The only thing I can encourage you to do now is to exercise ALL THE TIME (a few times a day). And stabilise her legs when you're not exercising to keep the achieved progress. If there are no doctors specialising in AMC in your area, try finding a physiotherapist as they'll usually know how to exercise with your daughter and they might also be able to connect you with some good doctors. I wish you and your daughter all the best!

[@pemalhamu360]

@@99able thank you so much❤

[@Lifewithyaana]

Hello, my baby is also having AMC. He is only one and half month old. I have few questions. how old your child is?? What is her status of lower limbs? I mean have you done the casting or you have started doing the excercises??

[@j.kh.1357]

no problem you beautiful and strong girl

[@keziafloreschristensen7719]

Hi, did you have knee flexion contractures too?

[@99able]

Hi, so sorry for such a late reply. I don't use this account anymore. I do not have knee flexion contractures and never had any bigger problems with my knees. I can't straighten one of my elbows, though.

[@pemalhamu360]

Thank you for sharing your video. My baby also has the same disability as your bt only at her lower limbs. Because of the pandemic her treatment was started when she was two months until we met a doctor after we came to a big hospital. We live in a small town there r no big or good hospitals. Bt my concern is tat the doctor treating my baby don't have much experience in this field. Though he has knowledge it seems it is his first case. I want to go to a specialist bt don't have any idea. I am from India. Your video has given me a new ray of hope n encouraged me so much. If u could guide me further? Where i can take my baby for appropriate treatment?Once again thank you so much for sharing it gives emmence hope to parents like me. God bless you

[@99able]

Hi! I've replied to your other comment with some advice :)

[@hannabarb5143]

Hi I know it’s 2 years since you posted this comment but I also have AMC and go to a excellent doctor in West Palm Beach Florida, you can look him up on google his name is Dr David S Feldman. He’s really good and experienced for AMC! I hope this is helpful, I hope your journey (with your AMC baby) is going well!

[@aurorab.farias5549]

Hey! I have AMC! I LOVE to find your Channel! However my AMC affects my arms and hands more than my legs. I can't take my arms Up.

[@99able]

Hi! Thank you for your comment! It’s always great to hear from other AMCers ❤️

[@ultimatesurpriseswithbarno3754]

Hiii

[@j.kh.1357]

😍😍👍👍❤❤💐💐👌👌

[@petuniadahlia9511]

❤❤❤