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Open Forum => Prayer Central => Topic started by: crustpope on July 06, 2011, 03:00:22 PM

Title: Prayers for my Family
Post by: crustpope on July 06, 2011, 03:00:22 PM
My son has recently been diagnosed with Duchenne's Muscular Dystrophy.  Short version is that I went from having a lifetime of dreams for my son to realizing that I will likely be burying him within the next two decades.  I cannot begin to describe the sorrow that I feel right now. 

Please pray for me as I try to keep it together enough to help my family survive this.

Please pray for my wife as she is taking this particularly hard.  She has a history of depression and my fear is that she may end up falling into a depressive state again.

Pray for my inlaws and my parents and siblings as they struggle how to deal with this and relate this to their lives.
Title: Re: Prayers for my Family
Post by: Ken4Christ4ever on July 06, 2011, 03:12:28 PM
I'll be praying for you guys. How old is your son?
Title: Re: Prayers for my Family
Post by: TechnoEthicist on July 06, 2011, 03:13:49 PM
we'll be praying!
Title: Re: Prayers for my Family
Post by: Nameless on July 06, 2011, 03:18:36 PM
My family will be praying :prayer:
Title: Re: Prayers for my Family
Post by: YourMathTeacher on July 06, 2011, 03:39:36 PM
I pray that God will give you strength.

Remember that I have a guest suite in my home that you are welcome to use when you want to get away on a family vacation to Orlando to create memories or just have a respite for your wife. I can likely get you into Disney for free.

If you are comfortable with it, please PM me you and your wife's names and address (or email). My wife is a prayer warrior that likes to pray by name, and she has the gift of encouragement and would like to write to your wife as a support.
Title: Re: Prayers for my Family
Post by: TheHobbit13 on July 06, 2011, 03:41:59 PM
Praying.
Title: Re: Prayers for my Family
Post by: Prof Underwood on July 06, 2011, 03:43:02 PM
I hurt for you my friend.  I will certainly be praying, and would like to do more if you'll let me know what I can.
Title: Re: Prayers for my Family
Post by: Captain Kirk on July 06, 2011, 06:26:16 PM
Matt,

My heart hurts for you. I am and will continue praying for you, your wife, your son, and your family. If you need someone to talk to you can always call.

Kirk
Title: Re: Prayers for my Family
Post by: crustpope on July 06, 2011, 06:38:07 PM
Ken my son is almost a year and a half.  we found the condition as we were doing tests to determine the underlying causes behind his developmental delays.  It is unusual to find it this young because children usually dont begin showing symptoms until their mid childhood.  Unfortunately catching it early does little to nothing with regards to treatment or prevention with this relentless progressive condition.

My only real hope (outside of my faith in Christ) is that perhaps some current therapies like gene therapy show some promise quickly and come in time to give my son a fighting chance at extending his projected lifespan into adulthood.  Right now there is nothing available that I know of.


YMT, we will have to wait a couple of years to take you up on that offer because he is not old enough to even know anything Disney yet.  I will send you our information though and do appreciate the prayers
Title: Re: Prayers for my Family
Post by: soul seeker on July 06, 2011, 07:19:51 PM
Matt,
   As I stated on Facebook, Laurie and I are heartbroken, and we are here for you.  We will do whatever we can.  Please, don't hesitate to ask.  In the meantime, we will continue to pray. We love you!
Title: Re: Prayers for my Family
Post by: Red Dragon Thorn on July 06, 2011, 08:34:03 PM
Matt,

My thoughts and prayers go out to you and your family - Do you have a suggestion, or preference for a Duchenne charity that I could donate to?
Title: Re: Prayers for my Family
Post by: crustpope on July 06, 2011, 08:52:09 PM
Matt,

My thoughts and prayers go out to you and your family - Do you have a suggestion, or preference for a Duchenne charity that I could donate to?

I havent even gotten that far at the moment. If I had to suggest one at the moment it would be the Muscular Dystrophy Association which is a general fund for all 9 types of Muscular Dystrophy
Title: Re: Prayers for my Family
Post by: Ken4Christ4ever on July 06, 2011, 09:02:23 PM
Matt,

Is there anything that we can do to help you guys at this point on top of praying? Let us know now or in the future as needs arise.

Ken
Title: Re: Prayers for my Family
Post by: crustpope on July 06, 2011, 09:25:14 PM
Matt,

Is there anything that we can do to help you guys at this point on top of praying? Let us know now or in the future as needs arise.

Ken

Right now I cannot think of anything else that we need.  What I really need is a job that can pay me enough so that my wife can stay at home full time with my son.  Anyone got one one of those here in Cincinnati that I could apply for?

One major blessing is that many of the top MD doctors in the world reside here at Cincinnati Children's Hospital
Title: Re: Prayers for my Family
Post by: Sean on July 06, 2011, 09:48:31 PM
Praying that your son will have a full life and that your family will remain strong in the LORD through this.
Title: Re: Prayers for my Family
Post by: crustpope on July 06, 2011, 10:15:52 PM
On a positive note, there is a chance that he has the less progressive Beckers Muscular Dystrophy.  It basically boils down to how damaged his X chromosome is.  If he can produce no Dystrophin (a protein that helps shield muscle fibers) then he has Duchenne's, if his x chromosome is slighly less damaged, then he can produce a small amount of Dystrophin that would delay the onset of MD by several years. For reference DMD, or Duchenne's Muscular Dystrophy patients often lose the ability to walk by age 12 and have a life expectancy of late teens or early 20's while Beckers' MD patients can often walk into their 30s and have a lifespan that can last from 40- a near normal life span.

So there is still plenty of reason to pray and pray hard.  The doctors are pretty confident that it is DMD but we wont know for sure until we get back the full genetic spread in three weeks.
Title: Re: Prayers for my Family
Post by: YourMathTeacher on July 06, 2011, 11:21:38 PM
So there is still plenty of reason to pray and pray hard.  The doctors are pretty confident that it is DMD but we wont know for sure until we get back the full genetic spread in three weeks.

That gives us three weeks to pray for favorable results.
Title: Re: Prayers for my Family
Post by: TheJaylor on July 06, 2011, 11:46:36 PM
On a positive note, there is a chance that he has the less progressive Beckers Muscular Dystrophy.  It basically boils down to how damaged his X chromosome is.  If he can produce no Dystrophin (a protein that helps shield muscle fibers) then he has Duchenne's, if his x chromosome is slighly less damaged, then he can produce a small amount of Dystrophin that would delay the onset of MD by several years ( for reference DMD, or Duchenne's Muscular Dystrophy) patients often lose the ability to walk by age 12 and have a life expectancy of late teens or early 20's while Beckers' MD patients can often walk into their 30s and have a lifespan that can last from 40- a near normal life span.

So there is still plenty of reason to pray and pray hard.  The doctors are pretty confident that it is DMD but we wont know for sure until we get back the full genetic spread in three weeks.
Be sure to remember to let us know the results if allowed right away so we can keep praying.

I'm praying hard and hoping for a miracle.
Title: Re: Prayers for my Family
Post by: uthminister [BR] on July 07, 2011, 09:52:05 AM
No words...just prayers. Love you guys!
Title: Re: Prayers for my Family
Post by: boughtwithlove on July 07, 2011, 10:54:30 PM
Of course.  In times like these, we remember how much we need Christ and His grace to get us through.  You are all in my heart as well as that of our Savior.
Title: Re: Prayers for my Family
Post by: Sean on July 08, 2011, 09:04:18 AM
Romans 15:13
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
(NIV)
Title: Re: Prayers for my Family
Post by: The M on July 08, 2011, 04:33:30 PM
Praying for healing and peace in the midst of hard times.

“Bless the Lord, O my soul, and forget not all His benefits: who forgives all your iniquities; who heals all your diseases …” Psalm 103:2
“The effective, fervent prayer of a righteous man avails much.” James 5:16
Title: Re: Prayers for my Family
Post by: galadgawyn on July 21, 2011, 10:37:07 PM
For those interested in physically supporting Matt, I have posted about a fundraiser event in the tournament section.
Title: Re: Prayers for my Family
Post by: crustpope on August 30, 2011, 10:55:47 PM
Please see my update thread!
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