Living With Duchenne Muscular Dystrophy

[alpeyek]

Hello. I'm Alexander. So, you can call me Alex too. And I have DMD too... That thing is terrible. I'm 22 and doctors say that my life is shorten by 30 years and cannot be longer. But I feel so energized and inspired in all aspects of life... I dream about own family, wife, children... But this DMD is suffocating. I wish all the people around the world were free from this mess. And I hope Alex will aquire great life.

[AnndyMate]

I'm making a video for my brother as we speak, i am also 16, and that brought a little tear to my eye, hope you're okay

[XtremelyAwesome1]

I have dmd n I hope they find a cure

[AnndyMate]

@XtremelyAwesome1 i hope they do, sorry to hear that mate

[ayeroseify]

i am so happy that you love you brother so much.. i know that its not that easy to have that kind of disease.. i understand how you felt because i am also a special education student..

[michellea15]

Hi Kaitlyn, very nice video.... I can't help but crying while watching your video... like you I also have brother and 2 cousins that have DMD but they were all in heaven now... I really missed them and it really breaks my heart... my prayers and sympathy to people who have DMD and also to their families... I'm hoping that cur ewill be found soon.... god bless you and your family...

[nsdrdodo]

hey . i am an Egyptian medical student and my best friend has DMD too and he is 20 years old. so i know how it feels and i'm really sorry for you.... but there is always hope in Jesus , and he can do miracles. i'll be praying for your brother and your family. God bless you.

[Mitosynergy]

mitosynergy

[expressionsblue]

hi...i am compleatly in tears right now...my nephew was diagnosed today just a few hours ago with dnd...he just turned 4 this sunday February 6...theres no words that could explain how scared i am...so imediatly i turned to the internet to try and find out as much as i could about what going on with him...thank u for ur video...my prayers r with ur brother, my nephew and all the boys with dnd

[clicker009]

@expressionsblue

stay strong! i hope you are doing ok. it is such an unfair disease but the only thing that we can do is to keep hope. your family will stay in my prayers!

[colakurom]

Hi, I am a medical student in Romania and I want to thank you for taking such good care of Alex. You and your family are his heros. In my country there is almost noting that can be done in dmd. Because of you he will have a decent and longer life. Best of wishes from Romania.

[clicker009]

@colakurom

thank you this means so much!

[channisipod]

GREAT VIDEO

[leighalisensky]

What a beautiful video. Your brother is adorable! I would love to just give him a hug. Thank you for doing something to help get the word out there and get awareness. You are an amazing sister and person. I am praying every day for a cure for our boys.  We will end Duchenne!

[MsCarebearbaby]

im so hurt i cry ever day im crying right now my son was born with cmt and md and he is wasting away in front of me he should be in school like ever other kid but he is not he is in his bed in pain

[clicker009]

@MsCarebearbaby

i am so sorry, i know how terrible this disease is. its ok to cry. when it seems like everything is bad try and look for the many blessings that are always present in life. "when one door closes another opens but we often look so long at the closed door that we do not see the one which has been opened for us" you'll be in my prayers!

[123becky3218]

im 16 also and my younger brother has DMD, your video is great for spreading the message about dmd. everyone should keep hope. x

[scarletngold]

this is a cruel disease. Let's fight this with a vengence. Donate to MDA. 

[Whitebabe1]

Hi Kaitlyn,lovely video.

My son Melvin(18years)has Duchenne too.

Your video reach Germany as well...so hugs & greetings across the miles.

[kazzah27]

This is so beautiful,the love u have for your brother is amazing......i am crying as i write this as i have a son with dmd, i wish your family all the hope in the world as i do with mine also.....love and prayers......xxxxkaz.

[clicker009]

@kazzah27

thank you that means so much! i wish you and your family all the hope as well & you will be in my prayers!

[robmayben]

Great video Kaitlyn. I am a teacher who works with students with all types of great abilities. Over the past several years I have worked to develop a device to help my students stay independent in my classroom. Last month Fox news did a story about David, who also has Duchenne Muscular Dystrophy and my and the desktop desk. The story is posted on YouTube as desktop desk and david. It is really cool. You are a great big sis, keep up the good work!!!

[msdarkstar1012]

i was really touched by this video, you and your brother are so amazing at a young age, in a few years, both of you will be unstopable!

[UnicycleGirl4]

This is beautiful. Made me cry. I am doing a project on DMD for school and found your video. You are an amazing sister and mature above your age. With people like you a cure will be found.

[jinx1993xxx]

i believe that illnesses like this need to be more well known, cancer has a lot of publicity these days and other illnesses can be left in the shadows, i know this from my fathers bowl illness, it is no-way near as bad as this but their isnt enough research and publicity about things like this. god bless and stay strong :)

your brother is an inspiration infact your whole family is :)

[zografable]

Hi, I am a dentist from Greece.The current therapy with real results is the stem cells,although not permanent but very effective and encouraging. People dont like to hear for this state of health(alternative word for disease). It just doesn't sell. Continue as a family, hope I helped.

[clicker009]

thank you! and im glad my video is reaching Greece! spread the word over there please and as cooldit1 said below in the comments "as a world, we will kill it" (dmd). it has to start with awareness, and then hopefully a cure

[mcsalcido]

wow this made me cry! i'm 29 and i lost my bother 16 years ago to dmd and now i see my 9 year old suffering from dmd. i wish something can be done soooonnnn!

[clicker009]

im so sry about your brother and 9 year old. your family is in my prayers.we can't give up, there will be a cure soon if we keep believing

[mcsalcido]

how old is your little brother? my son does the same thing of holding on to someones hand to feel secure that he won't fall.

[cooldit1]

kill it, kill it. As a world we will kill it. Duchenne that is. I too have it, and am exactly like your bro. I love life, i live to the fullest every day. People complain about rainy days, i wake up, no matter and say, "its a wonderful day today!" Rain is beautiful even if i have to stay inside to protect my wheelchair. Maybe ill go out in a beach chair and sit in the rain. I love life. I know of people who have this disease and mope. Its a shame. I'm even in a steel drum band playing lead tenor

[keenandwhat009]

You are so right to live life to the fullest, we do take evey day for granted. I wish they would find a cure for dmd soon.

Keep your chin-up, good luck

[clicker009]

you rock! really, the way you live is inspirational and keep it up because just like my brother im sure you light up a room with your smile and personality. we just have to keep believing, there will be a cure soon

[ShinaSouza]

Tenho 44 anos, se Deus me permitir, irei completar 45 anos no dia 29/ 12/ 09, estou muito feliz com jesus na minha vida.

[sammiebooboo]

Hey, this is a great video, and Im glad your trying also to get the word out, I lost my cousin back in april to DMD it was hard, if you ever need someone to talk to just send me a msg, Hope everything is going good :)!!!

-Samii<3

[clicker009]

@sammiebooboo

thank you for your commet, im so sry about your cousin, let me know if there is anything you need <3

[moviemakingbanter]

This is a lovely video and it's really nice to meet more sisters out there who is going through the same thing as me. If you ever wanna talk just let me know and we can swap emails :) Ohh and if you post your video as a video response to mine that would be good cos people are viewing mine from cure duchenne as well. Take care x

[clicker009]

thank you. im kinda new to the whole youtube thing so i think i was just able to do that but not too sure.

[wahidsafi]

hey there i would love to tlak to you my brother has DMD as well and were considering whether he should go through spinal surgery due to scoliosis or not due to the side effects and his age please reply back thank you

[moviemakingbanter]

heya, my brother had that operation this summer. there are a lot of risks, yes, but when you look back it was the best thing we could have done for him as now he's straighter and has an appetite again, and is more comfortable in general. it's scary but worth it. :) if you want to talk some more let me know.

[clicker009]

@wahidsafi

hi, i am so sry i am just getting back to you, i usually get emails regarding comments & for some reason i didnt get an email from yours & just looked at my page to see it! we can message each other for sure, i hope everything is going ok

[sher1663]

@wahidsafi Hi my son has DMD, did not have spinal surgery and has horrible scoliosis, he is 18, just got trach/vent I advise get it if possible Thanks. This is a great video always keep up the fight and hope!!

[wahidsafi]

@sher1663 thanks honey y brother is 18 too. :) i will consider it thanks sooo much

[wahidsafi]

@sher1663 thanks honey y brother is 18 too. :) i will consider it thanks sooo much i hope ur beautiful son is ok

[jagnmeg99]

you are an inspiriing little sis my little boy dakota was diagnosed with dmd last year he is 8 and has a 2 yr old sis who i hope grows to be the young woman you are thank you for your compassion and dedication to your brother and all with dmd

[clicker009]

thank you so much. im sure she will become a lovely young woman. from what ive experienced and seen with others who have this disease in their families, it really changes you and makes you appreciate every small thing in life. theres also 6 years between me and my brother and we are best friends so im sure dakota will have a life long friend in your daughter.

[dreamz123181]

my brother jus passed away from dmd. he was 18. if u wanna talk we can.

[clicker009]

im so sorry to hear that. thanks for your support it means so much