Hello all, My name is Amanda. I Have been married to my Husband Bill for 2 years and have known him for 10. He has BMD. His brother also has it. They Both have known about their BMD since They were pretty young. My husband is now 33 years old and walks on his own.He has 3 boys and is a great father to my daughter and holds down a full time job, While going to school full time on-line. My brother-in-law is 36 also walks on his own, holds a full time job and has 2 boys and a loving wife.  Yesterday the whole lot of us Went on a 2 mile hike up a "mnt" in the forest of MT. Baker national park in Washington. There were lots of Roots and rocks and things to fall down on. And trust me, there were falls :) But the both of them made it.With the help of some high tech hiking poles:) Im not seeing this with rose colored glasses.They do walk on their toes, And have trouble with stairs. There are times that I have to be the "pack mule". But I wanted to give hope to the young ones out there, or the parents that are only hearing the "bad" things. People with BMD CAN life full lives, They can have loving full families. It was breaking my heart to only read the Bad things...When I look at my husband, I only see him, I don't see the BMD. When he needs help with something he asks, and I help. If we have a daughter on our own we will help any little grandsons that may need it. I know that some day he WILL need a cane or a wheel chair. When that day comes I will be there for him. I know that it will be the hardest thing he will ever have to do. But I will be right there with him, and our kids will be as well. I love my life and my family. I love my husband, BMD and all.

It may seem bleak now, But with BMD there is no set rules...no matter what the doctors tell you. Just love and support those that have BMD and push them every day to be their "own" best :)

hi, I just wanted to say thank you for your story and giving me much hope for my little boys future.   It's been just over 3 years since my son's diagnosis (diagnosed @ age 7) it came as quite a shock for our family,, BMD just came from no where no other family members have or had this disease.  I spend the 1st year after diagnosis in a fog, spending my days dwelling on BMD and worrying about my son & his future.  I still worry but  I now have more good days then bad, I don't dwell on BMD anymore.  I now realize that my son will have a good life eventho he has BMD. Nicholas too is more accepting of his disease, he knows his limits and doesn't dwell on things.   He knows what he can do & will find ways around doing things that are more difficult.   He is  more open now about his disease & will talk about it  with his friends/classmates.  His friends are very accepting of him. The people who are not accepting we don't worry about them.    BMD will not stop him from being the very best he can be.  His future is bright!  thanks again, your story is uplifting & put a smile on my face.    

Your very welcome. I get tiered of people telling me that my husband cant do something or shouldn't do something because of his BMD. Saying that I shouldn't "let" him do this or that. But he is a grown man, And so I treat him as such. Like I said before if he needs something, he knows his limits, and will ask for help. I won't ever ask him to quit the job hes at until he wants to quit. I wont ever assume he cant do something. This post was my way of giving hope and letting others know that BMD doesn't have bill.....He has BMD,and we will take each day as it comes. And live our lives together happily with our children :)

Hi Amanda, You have an amazing attitude.  Thank you for reminding me to let Nicholas be who he is.  It's hard sometimes to sit back & watch him struggle.  As a mom, you just want to jump in help eventho help was not asked of you.  We are getting better at this.. Nicholas is getting better at asking for help when he feels the need & i'm getting better at letting him be, he will ask for help if he needs it.   I agree with you Nicholas has BMD, BMD doesn't have him. This past winter Nicholas class was going Ice Skating..Nicholas was excited to go!  I thought,  OH MY, Ice Skating is bad for his muscles.  He hasn't been on ice skates since his diagnosis!  How can I change his mind?  I worried for days prior to this outing..  The day of the outing we decided to give him permission to go... when help from Grandma Nicholas put on his skates and had a wonderful time ice skating with his classmates.. he was very proud of himself.  At  the end of the day all that matters,  is he had a good time.  It wasn't good for his muscles but it was good for his soul.