Christians with DMD/BMD


Christians with DMD/BMD

Members: 116
Latest Activity: Feb 3, 2016


A beautiful book for our boys

Started by Veronica E.. Last reply by Leigh Alisen Pernosky May 19, 2011. 5 Replies

Can DMD be your Idol?

Started by Lori Ware. Last reply by Alejandra Lagffer Jul 31, 2010. 7 Replies

Angry at God....

Started by Char Burke. Last reply by Linda Jul 29, 2009. 9 Replies

Comment Wall


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Comment by Veronica E. on September 29, 2008 at 1:07pm
Hi, all. I just joined the board this morning. A few minutes before I found out our little baby has DMD, when I knew we were about to get his test results, my only prayer that second was for God to give me strength, and he really has. I love the inspirational Bible verses you guys have posted. Here's one I really like:

1 Corinthians 10:13
No test or temptation that comes your way is beyond the course of what others have had to face. All you need to remember is that God will never let you down; he'll never let you be pushed past your limit; he'll always be there to help you come through it.
Comment by Dina on September 19, 2008 at 8:12am
Whenever our family goes to church i feel so wonderful and for the next few days I am motivated and I don't focus so much on my son's disease. I try to stay positive. But I find that a few days before Sunday I am sad again and feel like the world is against me. Is this normal? Does anyone else go through this. On a positive note my son had his first play date ever. He was so excited! My boy is growing up. I can't believe he is 9 and it has been 3 yrs since being diagnosed. Thanks for listening.
Comment by Emily on September 18, 2008 at 11:43pm
I just joined the community a few minutes ago and this was the first group I visited. I am so glad that we can encourage one another. After our son's diagnosis, our pastor used this verse in one of his sermons. It struck a chord with me and my husband. This will hopefully encourage you too.
Habakkuk 3:17-19
"Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the field produces no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior. The Soveriegn Lord is my strength; he makes my feet like the feet of a deer, he enables me to go on the heights."
This verse has encouraged us so much. When all else seems to be falling apart on the outside, we know that the Lord is good. We can rejoice in that. God has a perfect plan for our sons.
Comment by Julie on September 17, 2008 at 2:41pm
I came across this prayer and wanted to share it. It is St. Theresa's Prayer:

May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith.
May you use those gifts that you have received and pass on the love that has been given to you.
May you be confident knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise,and love
It is there for each and every one of us.

I just felt this prayer fit in every way. We all need peace within while dealing with this diagnosis. We have to trust in God that he put us here for a reason. We have to have faith in his infinite possibilities. Our sons are the gifts that we have received and we love them and God loves us. An d knowing we are a child of God gives us the freedom to live without fear. Our sons are in his hands, and that is good. May God bless you and your families. I hope this prayer touches you has it has me.

Julie Malecha
Comment by Michelle Strasheim on September 15, 2008 at 3:09am
Hello everyone... I am new to the sight and what a blessing to find that there was a Christian group on here! My son Tyler is 7 and I am so blessed to be his mother. I agree with you Julie, I can not imagine the hopelessness we would be feeling if we did not have the promise of our savior. I take rest in knowing that Tyler will be healed if not on earth than in heaven.
When he was first diagnosed and we were trying to come to terms with all of the info we were given, the only thing that comforted me the first few days was when my husband said to me "honey, there are people who are going to lose ther 4 yr old tomorrow and not know it is coming". I feel it is truly a blessing to have my eyes opened to the fact that today is a gift and NONE OF US are guaranteed a tomorrow on this earth.
Oh my gosh, I needed this site. There are no support groups and very limited resources where we are so this is great!
Comment by Julie on September 13, 2008 at 11:14pm
I don't know how anyone with this diagnosis could make it through the day without knowing that Jesus is there. I just remeber that All things are possible with God. I pray over Aiden almost every night and I believe it helps. I would like to pray with all of you because there is power in prayer, and power in numbers. Let me know a date and time.

Julie Malecha
Comment by Kelvinsmom - Michelle on August 28, 2008 at 10:36pm
My prayer request is for Michelle LB and her family on PPMD. She lost her home due to Katrina and is once again packing up to leave, as they are told to prepare. They finally got in a new home since Katrina and could be uprooted again if this hurricane hits. Please pray for her and her family as they have enough challenges like the rest of us. Michelle
Comment by Samantha Dearing on August 27, 2008 at 12:32pm
A new prayer son had his regular check up with his neurologist last week. his lung function has dropped from 97% for a healthy non-dmd child, to 85%. They told us that for a 12.5yr old with dmd, that those numbers are still ok. Anything below that is not normal. We were shocked. He is now at an increased risk for respiratory issues. Thanks for the prayers....

Comment by Kari on August 24, 2008 at 7:38pm
I just came across this discussion and my heart goes out to you. It was really hard for me to face realizing I may lose my son earlier than most, although knowing also not to take life for granted for any of my family as we are not promised a long life. But one thing that has helped me the most is knowing we as Christians and those who believe in Jesus Christ, will live forever. God has promised us eternal life through the death of His Son on the cross. In John 11:25-26, it says, Jesus said to her, "I am the resurrection and the life; he who believes in Me will live even if he dies, and everyone who lives and believes in Me will never die. Do you believe this?" That is why I instead focus on my Son's heart and the importance of teaching him about salvation and praying for that to happen. Also, I am reading through a book entitled "Heaven" by Randy Alcorn. I just ordered the
children's version also so that our family can study it together and get a proper perspective on what life will be like when Jesus returns. I hope this helps you. Thank you so much for sharing your heart with us. One saying someone just told me about is "Be Here Now" and also watching Kung Fu Panda even reminding me of this: Yesterday is gone, tomorrow is the future, today is a gift. I must remember to enjoy each day and every moment possible with my son. I love him beyond words as I know we all love our sons and have this bond like no other. We are blessed.
Comment by Kari on August 24, 2008 at 7:13pm
Thank you for sharing that beautiful verse with us.

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