Our Boy Christopher - Living with Duchenne Muscular Dystrophy

[@rockie0708]

My brother Christopher has dmd and he is now 31. We lost our parents as young adults and me my sister and older brother look after our brother in our family house. I pray for a cure for this disease. We live in Greenwich London, England. I just thank god we have the nhs here, I feel so sorry for you guys having to pay thousands of pounds. God bless, I pray for a cure to come.

[@mshottprisslav]

You all were angels to your brother God bless you ❤🙏

[@Roanoak]

My Son has Duchennes Muscular Dystrophy. He is 9 and is fully wheelchair bound. His legs deteriorated fast but he suffers from no other heath issues. he works with an aid in school and requires consistent help to learn. I'm a single mom and he is my pride and joy. The MDA has given us so much joy and hope. Summer camps, many group activities basically he has an awesome life. He'll tell you that too he's super happy and not shy one bit!

[@kulvirb]

Anyone watching this should know that DMD effects people differently. I never had processing issues and was always a good student, I walked until I was 13,and I only started using a ventilator at 38. I am now 46 and pressing a switch with my hand to control this iPad.

[@Daxire]

So you must haver Becker , is the same gene, but is less agressive.

[@daughterofphalasteen]

This is amazing. What beautiful boys you have. You are inspirational parents ❤

[@norlavine]

The love and devotion of these parents who work so hard for their children is deserving of all the support this world can offer, in every way possible....x

[@kennymorrison8103]

This strikes an accord with me with this wonderful young boy reminds me of my brother who had DMD sadly he passed away just before his 40th birthday and we was told that he wouldn't see past late 20s my love goes out to all kids we this please help to find a cure or something to slow down the disease 1 in every thousand boys get it when born please help the cause and god bless u Christopher keep fighting my lil friend

[@franciscoabano332]

I am a doctor and I really enjoyed the film, very informative

[@natashapreston-jones2559]

My little brother has Duchenne Muscular Dystrophy, I watched him go from walking to collapsing, to using a wheelchair part time to full time. I know how hard it is but I would never call it a death sentence, my brother knows the value and the beauty of life because of his condition.

[@gulensu]

Watching this thinking about Nolan. Praying for all those kids.

[@finley9045]

I know your pain my brother has this disease and it's heartbreaking

[@user-qi6sg5gb3o]

Same. My heart goes out to your family and especially your brother

[@jarrettog3661]

This is an amazing video. I love it so much.

[@stupollak]

Jarrett OG Thank you! My son made the film. Christopher is my student. It is a very special movie. Please share.

[@KiJoHe]

This type of science and biomedical equipment is what i wish I could dedicate more of my life too. I can't seem to get anything right to get the schooling. We are all with you. Some how, I'm a get some type of medical degree and I hope we find a cure. CRISPR gene editing. Humans are out there trying. God bless you all

[@KIM-kp9tq]

I wonder if you guys have heard of or seen the KZbin Britney and Baby? Her 18 month old son Nolan has just been diagnosed with DMD, and I hope she sees this video

[@azrielweil7089]

+Chloe Manners yes I saw, its really heartbreaking, I have been looking after every possible solution that I can e-mail her. Praying every single second of the day that some miracle happen and Nolan become healthy again like any other regular toddler.

[@KIM-kp9tq]

+Arif Ali it's so sad! I can't even imagine how Britts feeling! My husband studied genetics and says that there's a lot of hope for new treatment and cures atm including lots of break throughs in stem cell therapy to replace the wasted muscle. I hope that Nolan gets to use some of this treatment eventually ☺️

[@roymontymontgomery8944]

Arif Ali conscription has

[@lifewithduchenne3030]

Duchenne IS a death sentence. My son is almost 18 and I do everything for him. Stem cell therapy is wonderful but not in the USA. The FDA doesn't care if scientists have cures, they make it impossible or very hard to approve new drugs.

[@cutedpanda00]

@@lifewithduchenne3030 hello i have dmd can you please help to have a go fund for may euthanasia

[@mikevanhouten5499]

Go Christopher Go.

[@laxmimungi6477]

My son is also suffering from dmd it's really heartbreaking he is now 9

[@georgiasutton-cross379]

thats an amazing story and also an amazing school wish schools catered like that in the UK

[@stupollak]

Thank you. It's easy. Just have to remember why any of us became teachers in the first place.

[@zoofan9280]

georgia sutton-cross Wilson Stuart is an amazing British special School

[@mahtazdin]

we can't afford the right equipment. so is hard to take care. of my brother.

[@lifewithduchenne3030]

martha black what equipment do you need?

[@dakotaf2773]

I'm just posting this Steroids do help your son live longer… i have duchenne I'm 21 years old i can still walk!!

[@dakotaf2773]

if parents have question about this please message me on Facebook Dakota Ferrazzi

[@kotakondalaxmi8218]

Dakota F i want to see your walking vedio because my son also dmd he is 6 years old

[@hamzasaleem1895]

Dakota F hii

[@hamzasaleem1895]

Hi.where u from?

[@kotakondalaxmi8218]

Hamza Saleem iam from india

[@avakaty9720]

I came here from Britneyandbaby whos little boy Nolan has it , just to learn some more about it and the more stories i read break my heart. Does it run in familys or doe's the mother have to be a carrier to pass it on. Looks like your doing amazing job with Christopher and he looks so happy.

[@natashapreston-jones2559]

It's genetic so family members (females) carry the gene and pass it on to their children primarily boys, if the mother who carries the gene was to have the girl it would be extremely unlikely that the girl would get the condition but carry the gene instead.

[@shaikhjaved08]

Hi Stuart , I am looking for similar scooter for my 7 year old with lgmd, do you have any details of this. Javed

[@Sanjayclasses24]

my brother suffering frm mascular destrophy and me fine but i have victim of polio

[@soulsy210]

Just create a cure already. I can't handle this problem. I wanna be a normal boy

[@shamsalhedaia2949]

Allah willing soon you will be cured and my brother and all muscler patients in the world 🌍.

[@dksharma6426]

Hi I am from india and my son neerav sharma also suffering with this disease. Can any one suggest me medicine

[@sanamaham6794]

hello i want to ask you,his little brother is fine??

[@stupollak]

+katrina sharma Yes. Thanks for asking. Please share this video with as many people as you can. Thank you for watching.

[@dakotaf2773]

duchenne does have treatment steroids like prednisone,deflazacort help prolong life and walk longer. i have duchenne 21 years old and can still walk..

[@Gee5425]

Nope!

[@jaysimoes3705]

@@Gee5425 Yes. Also, we are now 7 years further down the line and the situation is changing and we seem to be on the verge of a breakthrough. SRP-9001 seems to be very affective (changing the disease course but in a small cohort of patients so wait and see). Probably on the market within 2 yrs or even sooner. We have Vamorolone that is not a lot better than Emflaza etc but has a lot less side effects. We are getting Givinostat very soon, that is also due to come to market and works different from corticosteroids, vamorolone and SRP-9001. There are a few other medications that work different and are in Phase 2/3 trials. Sometimes it depends on your mutation, but some of these medications are mutation-agnostic meaning it works for all patients. Now this boy is now 15 yrs old. DO mind some medications are now tested not in young boys but in kids older than he is. That is not so evident, since when you are 12+ a lot of damage is done. Still: the vital organs mostly not and so these medications can help even if people are in their 20s by now (depending on their stte of cours). I have to say I feel really sad Christopher is very likely to be wheelchairbound already for a number of years and currently there is no way of turning the clock back. But even here, research is ongoing to in fact turn that clock back one day. But that one seems to be more of decades than years.

[@Pieceofpie3]

This is so sad

[@mahtazdin]

more than treatment we need fund. for equpmient.

[@user-lk8fq7zc7e]

Do steroids help to improve muscular distrophy patients .

[@ibrahimamjad2703]

My son need too

[@bows.before.bros.1588]

my brother has it he is 12 just remmber to life life day by day does he go to mda camp

[@Jaydos02]

is your son on steroids?