A Life Worth Living: Pushing the Limits of Duchenne 

Oh, you have made a difference. This film is your legacy.

Hi guys, I'm Alen, from Bosnia And Herzegovina and I'm 27 now and have DMD. I use ventilator for breathing about 13 months now. I'm the only Duchenne patient in my country who is at home and breathing on ventilator. My country has about 3.5 million people. System here is not as advanced as western medical system, only reason I'm at home and not in the hospital, are my parents, who are also my caregivers. We as family moved boundaries here in my country. I still can't even sit in wheelchair, but I'm exercising to accomplish my goal, to sit again in wheelchair.

So emotional to watch it full... I watched it for 30 minutes and decided I can’t handle more... mother of a Duchenne boy and very scared to know what is going to come and we/my son will have to face all that... All I can say is not everyone is brave enough. You guys and your caregivers have superpowers to take all this and still manage to smile... I salute

Im a mum that lived and Loved 8 Beautiful years of my Gorgeous Joe's daily struggle with DMD & so many other medical problems .... you are Amazing keep shining Always like Mr Joe still does whenever i do a funraising crazy in his name 💙👣💫

I lost my brother at 32 when he was my best friend and my rock. He surpassed his life expectancy by 11 years. He was supposed to pass away when he was 16. He lived until he was 32. God bless you.

What an amazing carer that man has who is visiting all the other duschane men so genial and loving.i really wish the man who only had his mum as a career and never went out would have gi in a career a chance he seemed so scared my heart broke.

Hello my name is Doug I have Becker muscular dystrophy diagnosed at age 29 and I'm 47 nowin the year of 2018 I want to say thanks Jon for ypur amazing movie It had my emotions on a roller coaster ride happy one minute and crying the next minute very inspiring to me and to meet all these other people with sorry in worst shape than me and I been feeling real down in life this movie just gives me inspiration to pick my head up and things are not all bad and that I can still walk and I can still drive my old 71 ford Capri around that life is not that bad and staying positive and being involved in life Journey is the best thing we all can do. best wishes to all living with any muscular dystrophy disease

Oh wow, what a fabulous and inspiring documentary......an education, too, on this cruel condition....I hope everyone is still doing well 🙏🏾💖

No shame on Ian, his artwork is amazing and everyone has different needs at different times in their life. Mad respect to ALL Duchenne warriors, you are some seriously tough people! 💙🙏

Most inspiring movie I'd say, maybe more nowadays than religious or scientific enlighted matters and comments. This should be awarded because it's genuine thus usefull for us all!

Thank you for sharing! I hv Muscular Dystrophy and I don't let it keep me from enjoying life. Bless you 🙏🏽

The hardest part of having kids with Muscular Dystrophy is the pain it inflicts on our soul- You always ask yourself Can I Do more? Am I doing Enough? Did I make the right decisions to better my children's lives? I feel as if I am always struggling inside, yelling at myself to do more, to be better, to fight harder for my kids. But it would be a lie to say i'm not mentally exhausted... Like any parent I would do anything for my children and that anything has led me to the conclusion that I need help from outside forces. Honestly I feel ashamed of myself for asking you for help. Somewhere in my life I didn't plan correctly for my two boys and now because of that they have to pay for my mistake. Simple things like going to a movie, getting to a doctors appointment, going to church or just going for a Sunday drive have now all but become near impossible without the proper vehicle. My son Martin (23) has a tracheotomy and breathes with the assistance of a machine and eats through a feeding tube. My son Jacob (14) has just stopped walking about a year and a half ago and is now in a wheelchair full time. Getting A wheelchair van that could fit two wheelchairs would open up a whole new world for our sons Marty & Jake. www.gofundme.com/wheelchair-van-for-marty-amp-jacob

My son is 16 with DMD......Great opportunity for us to see it from the ones who have the disease. I think this video is AMAZING.

hi Jon this video has made me feel more positive about life with duchenne I am 21 I can do alot on my own still like feed my self and toilet don't need no breathing machines just yet but about to have a defibulator fitted. I was always told by the doctors I'll be dead by now but I will prove them wrong every single time by excersing daily and eating healthy. thanks for you video Jon it's been shared.

Good work jon i m muscular dystrophy patient nd I am female

where am from none of this technology is available. continue to push the limits brother.

My heart breaks for Jacob's family. I hope they get some counseling and start living live.Please if you're reading this, start making memories with your son. Grieving before time with only pull the whole family into a deep hole of depression, that will be hard to recover from..God bless you all

Jon - you are truly a hero.

Amazing, smart, intelligent and touching! You've touched my heart, i wish you'll be feeling great for the longest time, wish you love! Thank you for the great movie!

Thank you, Jon!

I can't begin to tell you how great I thought this film was. I am going for a care giver interview later this week and I decided to seek out some information regarding Muscular Dystrophy as I don't have any knowledge of the condition. I thought I would just watch the first several minutes, but it just sucked me right in and I enjoyed every bit of it! You rock, Jon!

Hi Jon thanks so much! God Bless you xx. I have a mild form of Becker Limb Girdle Muscular Dystrophy (carrier). You just inspire me to keep going.

the film sharing was great, thank you for sharing your stories,godbless

This was an amazing share. Thank you for taking the time to give us a deep insight into DMD. Hugs my bother.

Jon, you are a kind and wonderful man!

Thoroughly outstanding documentary Jon! I love your positive outlook on life I am severely disabled and use a powerchair although I don’t have duchene I can relate to many of the issues raised especially differences in provisions of services and equipment. I remain positive about life like you.

Your documentary was a full rollercoaster of emotions, from all the sides and aspects of people connected to DMD. Please be proud of yourself, because you will inspire others, have a positive attitude, contain an easy approachable personality, which enabled people to open freely, about their emotions, thoughts and feelings on different subjects, but also the hard hitting questions. You included the rawness, and the reality of all the different elements and equipment needed, and the team work for this complex muscle genetic disorder.

This is great. Thank you!

Thank you Jon!!

Thank you for making this. You are so strong mentally for having a positive outlook on life in that situation, its really inspirational. I been a carer for a guy with DMD for 4 years now and this really helped me understand the mental part of the disease abit better. Keep being strong and push yourself

Hi I Like what you are doing because I have the same problem and I want to keep waking for as long as can and am 13 years old and good luck you are doing a very good thing.

I loved the questions you asked Jon, you are a natural presenter and interviewer - I hope you do a lot more of it. Thank you

Good work Jon! God bless u! :)

Excellent!

you are amazing guy Jon, I don't have any disability, but I heard of Duchenne that's why I started watching your documentary. Very good movie!

Great movie Jon. You should be glad you did it. I have cerebral palsy and have been gay all my life. I have not been in a relationship for a while but try to write and do ideos and bring about change also. Thanks for doing this. Reminds me of my friends I had growing up. I went to an orthopedic school and went to school with a lot of people who had Duchenne.

Duchenne has no limits; folks afflicted by it do.

What an awesome film . Cheers Jon.

Great work buddy, I really enjoyed that. Very touching and very eye opening. May I suggest to you the work of Michael Newton. "Journey of souls" and "destiny of souls". Can send you audiobooks if you like. All the best regardless!!

Man. And I thought I have accomplished things. This video is an awesome accomplishment. And it shows so much about what will we have to go through with Duchenne. Can we talk about me writing an article about your journeys for my website?

Thank you so very much for sharing this! Iam a caretaker. I prefer writing, I take care of a best friend. She is an awesome person. I will show her this video, she will be happy to listen to it 😊

Can someone advice me what king of medicine or vitamins i can give to my brother because he have DMD. He is 24 year old now but except bio food he never use any medicament because we are from Albania and the information from Doctors is very poor and help from government is almost zero.Till 23 year he been guiet good,with no many problems but just this year he start having problem with swallowing and breathing.personally i moved in UK now to have job and to help my brother. If someone can suggest me anything i will appreciate.Good bless you all.

Your life means something...you are on this earth!

My son has Mdm it breaks my heart to see him going down fast all becouse of a dr he could have been getting infections treatments over a year ago we live here in lousiana it's sad it's like all I get to do is watch him die he wants to do independed living do they have a indp.living ava for ppl with dmd

Great documentary and production coverage. Has this been on BBC?

This is heartbreaking I came because of britneyandbaby and I’m scared for Nolan but he will be strong ❤️

My brother is suffering from this he is about 16 years old in age....

Why didn't he tell parents: enjoy your boy NOW, there's nothing wrong with him at the moment, don't think about future, because who knows what it'll bring, maybe cure or at least treatment.

Grst music in your video by the way.

17:27 is that Trish Stratus?

Who thumbs down this?

Am female with Duchene and so is my son 😢

you guys have no vent? eat while lying down?

My little brother is 30 years old with DMD .

actually, I do have one problem, it's his driving- it's on wrong side of the road. One of these days you'll cause accident.

He laughs like Beavis and Butt-head.

A ka ilac per kete smundje

is there anyone who is on teenage( age 20 ) without wheelchair

Oh my goodness how is the moving and handling correct here?

I am LGMD

It’s a shame there’s not a whole lot of subscribers to this channel. And I see some of the garbage that has thousands and thousands of subscribers. I’m sorry that this channel doesn’t have more. This was very interesting and it makes me realize how blessed I am. Because I feel sorry for myself at times and I should not. I used to say that all the time, life is not fair. I had polio from the vaccination as a baby. I realize how blessed I am that I can walk with the brace and a crutch and a walker. God didn’t do it. I get angry at God once in a while. But it’s not his doing. I don’t think you can get through life without God. There’s no hope otherwise. And I’ve been through a lot. I know the last thing was the death of my husband. Please please ask God yourself he will answer you.

The

this is not that rare disease :)