Living With Muscular Dystrophy - The Markell Family - Our Special Life - Episode 5
HTML-код
- Опубликовано: 2 май 2012
- Sophie has a rare form of muscular dystrophy called Emery-Dreifuss. She is celebrating her 13th Birthday and is Vice President of her student council! She has incredible control over her feet and is able to paint and play computer and Wii games with her right foot.
Our Special Life looks into the lives of families with special needs children. In each episode, we'll profile a family facing realities and challenges as they raise a child with special needs.
CafeMom Studios is Motherhood as we see it. We feature authentic voices, compelling stories, and topics moms care about. Subscribe now to CafeMom Studios so you never miss an episode! ruclips.net/user/subscription_c...
![Jordan Adetunji - KEHLANI REMIX (feat. Kehlani) [Official Video]](http://i.ytimg.com/vi/EeJ8n5PxFGE/mqdefault.jpg)
Such an amazing young lady!!
What a strong mom and even stronger daughter. God bless you guys!
She's kind of amazing with the way she uses her foot like a hand!
I Like How when she plays the Wii she uses her foot....kinda cute
she really is a cutie and a pretty girl. praying for the family
This just melted my heart.. my little sister had muscular distrophy as well. She did the same thing your daughter did.. she would do everything with her legs.. it so cute.. I would always kiss her little feet.. she was my bestfriend/sister. She was my everything ..your son and daughter remind me so much of me and my sister, we were so close and would always do stuff together... she was never angry either she was always happy and smiling man this just made me get a flash back, this is beautiful
Awesome video. My cousin who will be 33 has SMA Type 2, and I am always in awe of his parents and their dedication to him. He is actually going to make his own movie, he has soared far beyond what the doctors expected of him. Thank you for sharing your family life...I pray too for you that you get to keep her...
Beautiful story, thanks. God bless you!
This girl is lucky to be in a loving family, with a nice brother besides a wonderful parents.
Such a wondeful little girl!
What a smart kid!! I'm honestly really impressed by how she uses her feet. That's a smart move! Here I thought my trick of picking up my dropped crutches with my feet was a good one. I have been clearly outdone by the master.
Also, I'm thrilled you get the nursing care. I spent 3 years helping to care for a family friends dying daughter. For many years, they got about 20 hours a week. She was on a vent, her g-tube was only a vent because her entire GI system had shut down, had a triple lumen central line, plus she was on TPN and had a foley cath. She had breathing treatments, a vest session, and nasotracheal suctioning every 6 hours. The mom did it with only 20-30 hours of nursing a week for the first 24 years. It wasn't until she was divorced that she finally got full time nursing. It's trashed her body and it hasn't helped any with her psychological health, either, especially since her daughter was home bound for over half of that.
People don't realize how critical the nursing care can be, especially with kids as bright and independent as Sophie is, not just for physical health but also for psychological health. It allows the kid to grow up some, to establish independence and the ability to have the kinds of relationships with caregivers that they'll need for their whole lives.
greatest mother
Im doing a Presentation on Muscular Dystrophy, I was so amazed by Sophie. Happy to see her smiling. :-)
My brother had Duchenne muscular dystrophy he died age of 27 he was an amazing person an angel in our skies above r.i.p my big brother forever missed 29/11/1977 - 10/10/2005
I feel so sorry for her
My Cousin has muscular dystrophy. He was diagnosed last year. He's 7 years old, and he still does all the things that he used to. You are an inspiration to me and my family so I would like to say thank you.
Wow she has so much coordination with her feet. I would be able to paint with my feet.
Really nice. Everyone should be lucky enough to have parents like these, especially children with special needs
She is so beautiful
Sophie is the most beautiful girl I have ever seen and the most courageous girl
Shes so beautiful
What a beautiful family. I am so glad I got to know Sophie today. Lots of love and best wishes coming your way!
Ohh she is so cute *-* Loved the video!! I have EDMD too, but not as severe as that of Sophie, and I was fascinated to see how well she handles the objects with her feet!! Is great!! God blesses you and your family little Sophie!!
P.S.: Sorry the bad english!!
I have bmd
My brother had muscular dystrophy he passed away when he was 20 or somewhere around there i wasn't born he had to use he's feet a lot
what a cute smart girl..
Made me reminisce so much, made my night.. God bless your daughter, so lucky to have her around.. :)
So beautiful- near tears
I feel so heart broken by this video
Such a beautiful family you have
I too have lgmd and use my feet a lot lol I love how she finds a way to do what she wants! What a beautiful little angel!!!
I had bmd
i have muscular dystrophy and it is an evil condition. i feel the hardest part is having difficulty breathing. It is also hard being a teen everyone in school just avoids you. it takes a while but you get used to it.
she is really pretty
She is really pretty and she probably has really pretty and muscular legs
Thank You for sharing it.
Sophie has an instagram! it's @chiligirl99. Give her a follow because she's still just as beautiful!
I am privileged to know Debra, and she is just as warm and natural and strong as she appears here. Even better (sorry Deb!) I have been lucky enough to meet Sophie on several occasions, and she is a fantastic kid -- creative, funny, smart. This is a beautiful family and we're all fortunate you shared your story with us.
she's really lucky... or maybe the family, to have enough money to hire a nurse and keep all the treatment.
NOW THAT SHE PRAYED, ALL HER WISHES CAME TRUE! OH LAWDYLAWDY PRAISE JESUS. PRAISE JESUS LAWDYLAWDY PRAISE HIM, AMEN.
Thank you so much for sharing your life with us all! I was wondering if she attends camp?
Hi... my brother michael is 16, he'll be 17 on june 3rd. He has duchennes muscular dystrophy. He goes to highschool with a nurse. He has a tracke, (tube in his throat to help him breathe) and a vent. he is in all AP (advanced placement) classes! i am 14 years old and i am his little sister. my name is ashley, and i just wanted to let you know how happy i was when i saw thhis video. thankyou so much. this is so inspirational...and i love this videos. thankyou so much...
ashley
God bless her❤
I have the same deasise...
She is beautiful girl and your son is nice
kids are awesome
and parents are awesome
its hard for some ppl liveing with Muscular Dystrophy we need to keep talking about it and dont stop
Small for 13 but she's cool
sophie is beautiful
I had a young cousin you passed away at age 16. He had Dushane and unlike this young lady, he was very angry.
Most people with congenital conditions don't get upset about their condition. It's normal to them.
They are used to it because they don't know life any other way
Not necessarily. Many of them wish that they didn't have to be in wheelchairs all the time and could do all the things other people can do
Muscular dystrophies are a group of diseases where the person loses more and more function with time and usually dies young. It's not at all the same as being born with something. They're born with the genes but it often takes time before any symptoms start. Then the disease gets worse and worse over time so it's always changing and they're always losing abilities they used to have. There are different conditions including some where the child dies when they are a toddler (their lungs and heart get too weak) and some where someone might live into their 20s or 30s and some where they can survive longer.
awwwwwwwwwww never mind she is sooooooo cute ide wanna be her friend
I follow her Instagram and she lives by me and goes on the same vacations as I do. She’s an old soul and loves animals. She’s super awesome
How old is she now? And she so cute and beautiful
How is Sophie doing?
Hey Sophie, brlsted birthday wishes . Take care
She's cute.
Yup
Thanks for posting this video. I am an adapted physical education teacher and was wondering if it is common for females to have EDMD?
Sophie is awesome! Fuck god for ignoring a sweet girl like this.
I bet she doesn't even lift.
weird is better than being normal
wouldnt*
😓
JUST UIGLY EWE GIVES ME nightmares fusk!!!
:"(.....Zomg Im Soooo Srooy (Im Havein a Brain Fart with my spelling)...im Prayin For Your Girl :"( Get Better
miracles are an everyday occurrence. the impossible takes a little longer. impossible is only impossible if you buy into that and I don't. - Be well lass - be whole - be healed - be happy - healing sent. there is no such thing as a big or a small miracle - just miracles.
how come she talks like that @ 3:26 but then so clearly @ 3:50
What happened
What do you mean? She was born that way
+BOB!theGMObanana oh really
Yes really. Muscular Dystophy is genetic.
Is there any way to contact the Markell family? I would love to help them realize that their little girl doesn't need to live like this. She can have a normal life. She seemed to somewhat understand God, although it would seem that she doesn't realize that Christians that have been baptised with the Holy Spirit, have the ability to heal others. I was born with Emery Driefuss 21 years ago, i was healed of it a few months ago. There is no trace left.
Please don't come on these videos and try to manipulate people like this. It's very immoral. You should be ashamed of what you're doing.
good news for parents of muscular dystrophy patient we got good results in muscular dystrophy case with the help of acupressure, massage, reflex therapy and power meditation when we started treatment CPk is a 13970 after the treatment of two months when we checked CPk come down to 3260 again after the treatment of two months when we checked CPk come down to 817
Now he feels better than before and he is going to school also and muscle development treatment is still going on he climbs stairs and walk easily than before
How is your child now? How old is he now?