A Life Worth Living: Pushing the Limits of Duchenne

[@clairexxx0405]

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 💙👣💫

[@rhonackimp]

Ohh am here too battling with Duchene together with my son.. both have Duchene 😢

[@clairexxx0405]

@Kimpayecrhona I'm a carrier my Beautiful Joe was Amazing as I'm sure you and you're son are keep strong.... Love & Hugs 🤗🕊

[@rhonackimp]

@@clairexxx0405 Aww thanks girl, to us the struggle is real..i can't even afford wheelchairs for us both so i only crawl when i can but my son lost mobility completely. What a challenge! 😢

[@rudrakshsharma]

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

[@Trumpingyall]

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.

[@Trumpingyall]

He had duchenne as well. He was a magical human being

[@PBXAKSH09]

​@@Trumpingyall you bro have any heart problems using medicine

[@Trumpingyall]

@@PBXAKSH09 not at first. But towards the end of his life yes

[@shelleysmith6342]

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.

[@dougscustomcargarage3434]

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

[@ALENTHEKING]

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.

[@kantilalbhanushali7572]

Power meditation is helpful for muscular dystrophy patients you can do in sleeping position also for further information please contact me on whatsapp [phone]. Within a month you will find relief in pain and improvement in body movement and breathing also

[@rhonackimp]

Are you still there my dear?

[@robertsdp92r]

I hope you are closer to your goals Alen, Keep pushing the limits

[@67CURTISluciene]

Thank you for sharing.

[@shelveyphillipsbowman8037]

I know u don't have a choice but to have a care giver...but u guys r so brave to face this everday

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!

[@Yoyo-gr3pb]

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

[@aliciatoole3263]

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.

[@PBXAKSH09]

Your son face any heart problem

[@MayimHastings]

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! 💙🙏

[@bransterthehamster4894]

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.

[@Zidanasma]

Do you have DMD too?

[@bransterthehamster4894]

@@Zidanasma I do yes 👍

[@Zidanasma]

My son recently diagnosed with DMD. He is 5 years old. Your comment gave me a ray of hope that in your age he can manage things like you do. We are so heartbroken at the moment. Wish you good health may you stay everthe way you are now.

[@aadi_the__]

@@bransterthehamster4894i also have muscular dystrophy can you please suggest me what i can eat healthy

[@rhonackimp]

​@@aadi_the__Are you there???

[@jasminegonzalez6047]

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

[@whitestar7721]

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

[@rhonackimp]

Ohhh finally a female like me is here with Duchene, are still there dear?

[@miriamburns2505]

A really well presented film. I learnt so much about DM. Aa an occasional carer it promoted me to reflect about many things.

[@ilynmorado5206]

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

[@yaelravzin1486]

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!

[@camrinabbott8519]

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.

[@camrinabbott8519]

they fand it win I was 1 years old

[@deborahharrell1778]

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

[@AnnetteMurphyger]

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.

[@kantilalbhanushali7572]

Power meditation is miracle and very useful for muscular dystrophy within a month you will find improvement in breathing body movement relief in pain for further information please contact me on whatsapp [phone]

[@67CURTISluciene]

Just WOW inspirational funny and incredibly humbling

[@sarahduggan2794]

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.

[@dralexjimenez]

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

[@HighTen_Melanie]

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.

[@lisastewart1231]

Jon - you are truly a hero.

[@GeoffBenge-d3k]

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

[@kalaxy2359]

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!

[@mshottprisslav]

Overtime that job will break u down do the best you can and pray think of yourself too we only have 1 body.

[@atheistleftcomment1807]

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!

[@soaringkite2673]

Beautiful! How are you doing 7 years later? ❤❤❤

[@MsDarSee]

Thank you, Jon!

[@Norreys]

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

[@manueladarazsdi9675]

Jon, you are a kind and wonderful man!

[@H4CK41D]

what a great doc I'd love to see an update on Jon today

[@MARTINWIERZBA]

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

[@jimij9820]

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.

[@aadi_the__]

Okay i can understand the situation because I also had muscular dystrophy I'm 16 I'm from india

[@NiemalsOhneHoffnung]

Good work Jon! God bless u! :)

[@cherylsmall4858]

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

[@paslyphilospher]

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.

[@victree1]

John Waddell I

[@sunnyflowerstarot8141]

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 😊

[@shellc6743]

What an awesome film . Cheers Jon.

[@janetleden6675]

Thank you Jon!!

[@keifling3]

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

[@0rbit80y]

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!!

[@cat_lover007]

This is great. Thank you!

[@TimothyCareyDV]

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?

[@PaulFilenko]

Excellent!

[@robertsdp92r]

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

[@mumr4268]

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

[@hogsworthhammer9211]

Duchenne has no limits; folks afflicted by it do.

[@gulshenmir6931]

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

[@davidfitzpatrick2684]

17:27 is that Trish Stratus?

[@cindypalombo8528]

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

[@Kuzakistheone]

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

[@rawadhasan9111]

Yo I fell sad

[@atheistmommy3710]

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.

[@delsychavez3415]

My little brother is 30 years old with DMD .

[@scarymary461]

You’re very blessed.

[@aadi_the__]

My little brother also have muscular dystrophy and he's 16 y/o

[@PBXAKSH09]

Your brother use ventilator yes or no

[@aadi_the__]

@@PBXAKSH09 no my brother not using right now

[@PBXAKSH09]

Delsy your little brother FACE any heart problem any medicine

[@AnnetteMurphyger]

Grst music in your video by the way.

[@Ms-ej2vb]

you guys have no vent? eat while lying down?

[@PyromagicExplosive]

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

[@scarymary461]

Doesn’t happen

[@rhonackimp]

Am female with Duchene and so is my son 😢

[@ronarabutler7827]

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

[@pathfindersalliance]

It isn't to be honest and I (Jon) don't get moved like that any more. But I do know others who still do. Perhaps we got lucky but in 10 years of doing it like that neither I or my carers suffered injury. I wouldn't recommend it though.

[@atheistleftcomment1807]

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.

[@familyislife36]

Are you an idiot. In England we drive on the left....

[@HighTen_Melanie]

amygiggles Think you’ll find it was sarcasm. 😉

[@ΒιολέταΓαλαζουλα]

A ka ilac per kete smundje

[@PerseEki69]

He laughs like Beavis and Butt-head.

[@burly636]

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.

[@EasyTeaching]

I am LGMD

[@nicculus42]

Who thumbs down this?

[@martinmilata232]

this is not that rare disease :)