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Scott Mac. Find out more about Scott Mac.
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  • #1

    Please pray for a miracle

    My son was diagnosed with HCM a weekago.

    A genetisist stoped by is room today and her initial diagnosis is much more depressing.

    Glycogen Storage Disease Type II
    http://www.emedicine.com/PED/topic1866.htm

    Although she did mention there is some new reasearch being done at Duke University they will not attempt this procedure on infants younger than 6 months. My son is only 4 months old.
    Scott Mac.
    Father of infant HCM Patient.
    Tags: None
  • #2
    Scott ,

    While I know nothing of the disease I've just read about nor about your beliefs I will tell you this... Prayer works miracles...and your family is in my prayers . Tonight , tomorrow and as you continue to move forward with this I will be praying that God's hands be on your child. My son is a 4yr. old with HCM. Please know that many others on this site have you in their thoughts and prayers as well. Take care and God bless!

    ~ Misty
    Good friends are good for your health.
    --Irwin Sarason

    Comment

    • #3
      Scott,
      Your in my prayers, best wishes to you and your family during this difficult time.
      We are here if you need us.
      Sincerely,
      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

      Comment

      • #4
        really true?

        Dear Scott,

        Are they positive? Have you gotten a second opinion? I'm so very sorry. I can only tell you that we are all praying for you and your family.

        best wishes,
        S

        Comment

        • #5
          prayers

          Scott, Your family are in my prayers. It would be helpful to me, if you don;t mind, knowing your sons name. When I pray, it seems helpful to have a name and also, with permission, I can add his name to a large prayer list. Please let me know.
          Jim Crosby
          I wish you enough.......

          Comment

          • #6
            Re: prayers

            Originally posted by jimmycro
            Scott, Your family are in my prayers. It would be helpful to me, if you don;t mind, knowing your sons name. When I pray, it seems helpful to have a name and also, with permission, I can add his name to a large prayer list. Please let me know.
            Jim Crosby
            His name is Sean MacPetrie.

            Thankyou all for your prayers and support.
            Scott Mac.
            Father of infant HCM Patient.

            Comment

            • #7
              Prayers

              Scott. Welcome to a safe place to vent and talk about what you are going through. Know that you and your family will be prayed for regularly. May God grant you grace as you walk through difficult times.
              Peace,
              Leon
              God Squad co-moderator
              Nothing is as gentle as strength and nothing is as strong as gentleness

              Comment

              • #8
                Scott, We will be praying for your little Sean and also for you and the rest of the family. May God grant you all the strength and courage needed to carry you through this most difficult time. Linda

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                • #9
                  Praying here in Little Rock Scott!
                  "We come into the world and take our chances, fate is just the weight of circumstances - that's the way the lady luck dances...roll the bones." - Rush

                  Comment

                  • #10
                    Sean,
                    How are things going. You are in my thought each day.

                    Best wishes,
                    Lisa
                    Knowledge is power ... Stay informed!
                    YOU can make a difference - all you have to do is try!

                    Dx age 12 current age 46 and counting!
                    lost: 5 family members to HCM (SCD, Stroke, CHF)
                    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                    Therapy - ICD (implanted 97, 01, 04 and 11, medication
                    Currently not obstructed
                    Complications - unnecessary pacemaker and stroke (unrelated to each other)

                    Comment

                    • #11
                      We are going to Duke.

                      Duke University is doing some reasearch and has excepted Sean into their program. I wont have any information untill our doctor had recieved the paperwork from Duke.

                      I'll keep you guys updated.

                      One of our prayers has already been aswered.
                      Scott Mac.
                      Father of infant HCM Patient.

                      Comment

                      • #12
                        Scott, we've been thinking about you, praying for you. Please keep us updated. I know it's overwelming right now, but you have so many friends here with you. Best Wishes! Linda

                        Comment

                        • #13
                          Scott - For Sean
                          I know this is all overwhelming for your family. I would be very cautious about research programs (I AM NOT SAYING IT IS BAD TO DO IN THE LEAST!)
                          Here are the things you are going to want to know -read, and talk about before you do anything.
                          1. READ THE CONSENT FORM and PROTOCOL - Ask any question no matter how little, no matter how silly, no matter how rushed you may feel.
                          2. DO your own research MEDLINE is a great source for this.
                          3. GET A SECOND OPINION NO MATTER WHAT.

                          You may feel that the researchers have been sent to you with hope and answers in the darkest of times. This may be true. This may not be true. You need to be the best advocate you can for your son and that is a hard job for any parent.

                          Get the names of all the doctors involved in the protocol - check up on them to see how much experience they have in the area of ped. cardiomyopathy.

                          I have a great deal of experience in research protocols (as a patient and family member) -I offer this advise to prepare you for a road I would think you have not traveled before. There are rocks, pebbles and forks in the road ahead... having a "map" may help.

                          If you need me call.
                          Lisa
                          Knowledge is power ... Stay informed!
                          YOU can make a difference - all you have to do is try!

                          Dx age 12 current age 46 and counting!
                          lost: 5 family members to HCM (SCD, Stroke, CHF)
                          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                          Therapy - ICD (implanted 97, 01, 04 and 11, medication
                          Currently not obstructed
                          Complications - unnecessary pacemaker and stroke (unrelated to each other)

                          Comment

                          • #14
                            Re: Please pray for a miracle

                            Hi Scott
                            I will definately be praying for your son Sean. Please keep us posted. All the best to you and your family.
                            Tammy

                            Comment

                            • #15
                              Re: Please pray for a miracle

                              Scott,

                              Love and prayers to you and Sean.

                              Faith

                              Comment

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