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Unbelievable but true

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  • Unbelievable but true

    Jakesmom here - haven't been here in a while, since my son Jake was born prematurely and diagnosed with HCM. Lisa, you may remember, he was basically handed a death sentence as we were told to just wait until the symptoms started and then somehow manage them if he lived. Well, he's been home from the NICU at Childeren's Hospital in Atlanta since August 23rd, and his past 4 echos have seen a complete REVERSAL OF THE CONDITION. HE IS CLEAR OF THE CONDITION. This is a complete mystery, and all the cardiologists at Emory Heart Center in Atlanta are scratching their heads and proclaiming it a first in their known history of HCM. Again, Jake was the youngest patient they had ever seen with the condition - 10 weeks ahead of schedule - and they are as excited as they are mystified by the whole situation.

    Jake will continue his cardiology appointments until he's about a year old, and then will be scheduled for only sporadic appointments if and as needed.

    He will be learning special prayers for all of you who share what he once had, and we're open to him being a case study for the further understanding of the disease in people of all ages. Maybe we can be of some help somewhere along the line of finding a gene, a glitch, a cell structure anomoly, something to help the future generations.

    My love and faith and prayers to all of you who responded to my cries of desperation and helped my husband and I grasp the concept of HCM and its implications. You are all more courageous than you will ever know, and are of a special God. Jake is now almost 10 lbs., laughing, smiling, cooing, colicky, and small for 4 months, but an absolute soldier of the world who has defied the medical world again and again in his so far short but exciting life. May he live a long and fruitful one.

  • #2
    Re: Unbelievable but reue

    That should be "...but TRUE...", in the title, not reue (what the heck is THAT?)

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    • #3
      Re: Unbelievable but true

      I'm so happy to hear your little guy is doing so well! I pray all continues to improve.

      Reenie

      PS: I fixed the title for you.
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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      • #4
        Re: Unbelievable but true

        You've made my day! Thank you so much for keeping us updated. The prayers for Jake and family will continue. Linda

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        • #5
          Re: Unbelievable but true

          That's so amazing! I'm so happy for you and your family.
          Dee, Mom to Dylan
          (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

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          • #6
            Re: Unbelievable but true

            What WONDERFUL news! I am so excited for you and for Jake!
            Peace,
            Leon
            God Squad co-moderator
            Nothing is as gentle as strength and nothing is as strong as gentleness

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            • #7
              Re: Unbelievable but true

              God is soooooo Good!!!!!!!!!

              Continued prayers,
              Beverly

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              • #8
                Re: Unbelievable but true

                Hi,

                I am so happy for you and your terrific news! I hope that all continues to go well for you guys, and that life with your brave little soldier just gets better every day.

                Debbie

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                • #9
                  Re: Unbelievable but true

                  WOW! WOW!! WOW!!! WOW!!!!WOW!!!!!

                  There's got to be some reason why we pray. This is it!

                  Please look back at the old responses to your earliest postings and you will see what I mean.

                  Congratulations and have a wonderful life!

                  Rhoda

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                  • #10
                    Re: Unbelievable but true

                    Tell me about it. The power of prayer has proven itself over and over to me lately, not just for Jake but for so many other things that I've been strongly praying for (all HCMA members, for example). There is simply no doubt in my mind. The answers come to us in surprising forms, too, and when we least expect it. Have faith! This is an incredible turn of events and is of a mystical, spiritual nature that I will never understand.

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                    • #11
                      Re: Unbelievable but true

                      I am thrilled for Jake!!

                      Let me share a little more information about HCM in new born children. There are cases where the child is born with what appears to be HCM - nearly all the cases I have heard of were in moms with gestational diabeties and by 3 months of age the child has no visible signs of hypertophy.

                      As there was no family history in Jakes case it is likely that the hypertophy was cased by an external factor rather than a genetic mutation.

                      Good luck Jake we are really happy for you and know you are going to have a wonderful future!!!

                      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)

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                      • #12
                        Re: Unbelievable but true

                        Thanks, Lisa. As you said, the gestational diabetes was not a factor here, as it did not exist. Something to file away for future, though, is my extreme P.I.H./Pre-eclampsia and massive swelling. Also the fact that we had to deliver early due to those complications, contractions which made him destabilize and restrict oxygen flow each time, my being hooked up to magnesium sulphate (evil!! nasty!!), and chronic respiratory infections requiring a lot of antibiotics while I was pregnant. Any of these could be contributing factors to the symptoms and the Sibley Heart Center has all this information. So we will just monitor this throughout the next 5 years and hope it stays stable.

                        My prayers are still with all of you daily.

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                        • #13
                          Re: Unbelievable but true

                          Such wonderfull news! I am so happy for Jake and all of his family. He is a real cutie!
                          Best wishes, Pam
                          Dx @ 47 with HOCM & HF:11/00
                          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                          Lead failure,replaced 12/06.
                          SF lead recall:07,extracted leads and new device 2012
                          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                          Genetic mutation 4/09, mother(d), brother, son, gene+
                          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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                          • #14
                            Re: Unbelievable but true

                            Woooooooohooooooooooo!!!!

                            This is so great!

                            I am so happy for Jake, for you and your whole family!

                            Best wishes and hugs to all

                            Eileen

                            P.S. I love the little cooing they do, it is so darling. This is so wonderful -- Enjoy
                            49 yrs. old
                            Diagnosed at 31.
                            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                            My brother passed away suddenly at 34 yrs old from HCM.
                            2 teenage children, ages 17 and 15.

                            Comment


                            • #15
                              Re: Unbelievable but true

                              I understand there may be "scientific" reasons for his improved condition- but I prefer to think it's about MIRACLES.

                              RONNIE
                              RONNIE

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