My name is Andrea, and my husband, Shawn, and I have two sons, one with Duchenne. We are followers of Jesus - Christians - and though we questioned and challenged God when we got our diagnosis, we are now feeling led to gently walk alongside others who are facing the same thing we are. We still hurt, we still cry, and our son is still getting weaker. We face the same difficulties as every family that has a child (or children) with Duchenne. Yet, we have an amazing hope. Our hope lies in Jesus. We know without a doubt that God is entrusting us with this, even if He never tells us why. If anyone is out there who hates God, who doesn't believe in Him, who is feeling despair because of this devastating disease and all it brings, we can relate. We were there, years ago. We won't judge, we won't lecture, and we won't try to convince you to believe what we believe. We just want to be a listening ear. If there is anyone who shares our belief, and would like to pray with us, we'd be honored to have someone to pray with.

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Hey, my name is Megan and I have Duchenne. I am a Christian, and I think it's so cool that you guys still trust God to get you through and want someone to be with you in prayer. I can do that! We can pray for each other, if that's all right.

Hi Megan! I'm so glad you wrote. I think it's cool that you're relying on God as well.  :o) Thank you Jesus for Megan! Yep, praying for each other is why we started this post. We're so thankful to our Lord Jesus that He is allowing us to learn, grow, and become more like him as we live with this thing called Duchenne.

What specific prayer requests do you have?

A couple prayer requests we have is that Sam (age 10 and still walking) will continue to come to terms with Duchenne, and not become too anxious about the future. Also, regardless of life circumstances, that Sam will grow to be an amazing witness for God.

Okay! Well, I've been anxious about the future as well, mostly about college. I'm worried I won't be able to be as independent as other people are, and I won't have my parents at college to help me. Thank you for your prayers; it really helps to know someone has my back, even in prayer!

Shawn said:

Hi Megan! I'm so glad you wrote. I think it's cool that you're relying on God as well.  :o) Thank you Jesus for Megan! Yep, praying for each other is why we started this post. We're so thankful to our Lord Jesus that He is allowing us to learn, grow, and become more like him as we live with this thing called Duchenne.

What specific prayer requests do you have?

A couple prayer requests we have is that Sam (age 10 and still walking) will continue to come to terms with Duchenne, and not become too anxious about the future. Also, regardless of life circumstances, that Sam will grow to be an amazing witness for God.

Yeah, heading off to college is a big deal, even when you don't have any physical challenges. I'd probably be anxious too! But remember, that's exactly what satan wants for us - his only mission is to steal, kill and destroy. If he can do that through getting our eyes off Jesus through anxious thoughts, or self pity, or pride, or whatever we fall for (and believe me we've fell for all of those, and continually have to be on the lookout) then evil wins that particular battle. Though as Christians, we know who wins the war, it's easy to lose a battle. We must do as Ephesians 6 says 'Put on the whole armor of God, that you may be able to stand against the wiles of the devil.'. And another favorite 'Do not be anxious about anything, but in everything, by prayer and petition, thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.' Philippians 4:6-7. One reason Paul wrote that was to encourage the Philippians to stand firm in the face of persecution, and live with joy and rejoice, regardless of their circumstances. Not always easy to do, I know!

Father God, thank you so much for Megan. We know you created her for a reason, for a purpose to fulfill while she is here, to laugh, to love, to enjoy your amazing creation. As she contemplates going to college and leaving her parents, remind her to focus on You, remind her to put on the whole armor of God every single day. We ask that you guide her as she figures out how to get any services she may need while in college, please put men and women in her path that will make her way smooth. We ask these things in Jesus' name.

Thank you so much! I actually got a scholarship the other day to my dream college, so that is a big answer to prayer. 

I've been praying for you and your son every time I think of you. Don't give up, okay? You've got somebody fighting for you through prayer. Tell your son I said hey!

Thinking of you lately Megan - how are you?

Have a very blessed Christmas. Jesus loves you so much!!

I want to say thank you for this post.   My son was recently diagnosed with DMD.  He is 6 years old.  If I can be honest, I am having a tough time with the whole thing.  Each of us have our Goliath that we have to face.  I am trying to make it a point not to spend time characterizing my Goliath and spend more time speaking into the destiny of my son.

I have a hard time accepting that there is NOTHING physically I can do to make his condition go away.  I can encourage, pray and support him. but I can't make it go away. I wish that it was me with DMD, not my son!  He knows that if there is a problem, dad will take care of it.  I am afraid that he will one day come to me and say, 'daddy, make my legs work'. 

We have an appointment 01/08 at Duke... Exon skipping 51-55 (whatever that means)

Thanks

I'm so sorry Jay. My heart really is breaking for you and your family. No words to describe what we go through, especially during first days/weeks/months/etc.of diagnosis.

You're right, it's tremendously difficult to accept we can't do anything, physically, about Duchenne. It was one of the hardest things to accept for my husband as well.

You ever read the book "Hinds Feet on High Places", by Hannah Hurnard (the one arranged for children)? A couple weeks after Sam was diagnosed, a dear friend gave me it. Took me a year or so before I opened it up. I read it out loud to my kids the first time, could barely get through it for crying every other page (fun). It is worth the read, even our kids have come to ask for it time and again. 

If you're not ready to talk with God yet, I understand where you're coming from.

Check this out, when you're ready. It's about 40 minutes long - Chris Tomlin and Louis Giglio (an incredible speaker)

https://www.youtube.com/watch?v=azFFc20_Ub4

Andrea

P.S. Finding out more about exon skipping will help you - it helped us to find out more about our son's variant/gave us a sense of empowerment. Our son has duplication of exons 3-7 - only about 5% of kids have this type, so it's rare. Exon skipping is way more common thus a lot more research goes into that type of variant!

 

Thank you very much will check it out

Keep up the good posts! Love seeing the interaction on here. So touching. Praying for each of you tonight!

Kara, my husband and I are humbled by your prayers - this has been a tough week for me, but the past day I've felt the burden turn more to 'acceptance with joy' - so thank you for praying. Thank you Jesus for Kara - may she feel your amazing arms wrapped around her this beautiful day!

Joni Eareckson Tada writes a daily devotional ...some of them strike home, some of them don't. Today's did. I pasted it below.

"For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort."

2 Corinthians 1:5-7
 
Yesterday we saw how your suffering can benefit others. My friend, Karla, was in and out of hospitals constantly before the Lord finally took her home, releasing her from a very painful disease. Her condition was made more bearable because she was able to witness the impact her testimony had on her nurses and doctors.
 
There was Christie, the transplant nurse, who was coolheaded in the operating room but coldhearted about spiritual things. Until she met Karla. There was Marge at the nurses' station who constantly whined about the hospital pay scale and new regulations. Her whining ceased when she became friends with Karla. Others going through menopause or midlife crisis began to see their problems fade, once they spent time with my friend. Eventually she became completely blind and unable to physically do anything. But Karla didn't have to worry about feeling useless or having no purpose for living. Through eyes of faith, she knew her suffering was for the comfort, encouragement, and salvation of others.
 
If you are distressed, it is for the comfort of others. If you are suffering, it has a bearing on the salvation of those who, even at a distance, witness your perseverance. God invites unbelievers (and a few vacillating believers) to examine the foundations of your faith. Your witness is as bold as the claims upon which your faith rests...and this makes skeptical people think twice about God.
 

Father and God of all comfort, help me to live in the way of 2 Corinthians 1:5-7 today.

 
Blessings,
 
Joni and Friends

Shawn, 

I've been thinking of you guys too! How is your son? I'm doing well! You guys have a merry Christmas too. Sending love and prayers your way.

Megan

Jay, 

Remember that His grace is sufficient to sustain you and your family in this hard time. Even if you can't fix it, He can. He really can. Have faith, be blessed, and have a merry Christmas. Praying for you guys!

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