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Rachel & Cullen


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Janiceland Find out more about Janiceland
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  • Rachel & Cullen


    I am Rachel & Cullen's aunt Janice. I wanted you to know that both Rachel and Cullen got tested for HCM. As of right now they are OK,
    but they will need to be tested again in 3 years or right before Rachel
    goes to college. I was so happy to hear this.

    Rachel and Cullen are living with their father, but they do not like living there. There father started drinking again after being dry all the years that Rachel and Cullen have been born. Also his new wife is not nice to Rachel and Cullen. She looks at them as someone more to take up room in the house and someone who uses money that she feels she could use if they were not there. (even if it is money that is coming from their mom's estate).

    Today I took them to the cemetery because it was 4 months today since their Mom went to Heaven. The cemetery also got her marker for her grave which Cullen is very proud of because he designed the marker. When we got to the cemetery we could not find the marker. They had planted it about 30 feet from her grave on someone else's grave. It is
    straighted out now, but Cullen became very, very upset.

    I told Rachel and Cullen that I was going to post an update on them. They told me to please include that they wish you all Happy Holidays.

  • #2
    Re: Rachel & Cullen

    Thank you, Aunt Janice, for bringing us up-to-date on Rachel and Cullen. We know that all of your hearts ache for your many losses, since the loss of Mother and Sister are not one loss but many. So we grieve with you for the host of changes that all of you are going through. Please let Rachel and Cullen know that we are all thinking of them and praying for them and will especially remember them during the holidays when the changes are likely to seem most severe.

    I am glad that their tests came back negative, but am not sure that three years is a short enough interval for their retests at their ages.

    Blessings on you all! May you find things to be truly thankful for this Thanksgiving!



    • #3
      Re: Rachel & Cullen

      Thank you for updating us on Rachel and Cullen. I still think of them and hope that their home life gets better.

      I agree with Rhoda about the interval between echos for testing them for HCM. It's recommended at their age that they be screened with an echo and an EKG annually until mid twenties or so. Then every 4-5 years is appropriate. Please let their dad know this. I'm sure he wouldn't want to play around with this after their mother died of this disease. They do have a 50/50 chance of developing it.


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


      • #4
        Re: Rachel & Cullen

        Thanks for the update. I pray regularly for Rachel and Cullen. My wife died when my kids were very young, so I have a soft spot in my heart for kids who lose their moms. Please convey my best wishes.


        God Squad co-moderator
        Nothing is as gentle as strength and nothing is as strong as gentleness


        • #5
          Re: Rachel & Cullen


          Thank you for letting us know about Rachel and Cullen they are in my thoughts and prayers. Please know that we all care about them and it is very hard what they are having to deal with. The loss of a mother is the worst and then to face these other problems each day seems unbearable. I will pray that they are given much strength to face these tribulations.

          May you all find comfort and peace during the holidays.

          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


          • #6
            Re: Rachel & Cullen

            Hi Janice,

            I'm so glad to hear news of Rachel and Cullen. I think of them often, and am always hoping that they are holding up well. I hope that they know that there are a bunch of people here who care about them and want to listen.

            Their story has just really touched me. I cannot imagine losing your Mom at such a young age.

            I'm so sorry that things aren't going well for them with their dad and stepmom. What a terrible thing they have had to endure - the loss of their mother, and then to have to adjust to life in a new home, and to feel unwelcome, at that.

            Please let them know that we are praying for them. I hope they will keep in touch with us, and that they will know that life can get better eventually.