Genetic Test Reveals CPVT

Well, one of the days we have been waiting for finally yesterday. We finally received confirmation from Lily’s genetic testing whether or not her cardiologist’s suspicion’s were right; if she has CPVT (Catecholaminergic polymorphic ventricular tachycardia). Her results were POSITIVE. I’m relieved that we now know for sure but terrified if her little sister Charlotte has it, too. Next week Charlotte, Jim and myself will undergo the same genetic blood test to determine if we have it and what side of the family it came from. Since there is NO family history of sudden cardiac arrest it’s a mystery to us. In the meantime we hope to receive our external portable defibrillator soon and we will carry it with us at all times. Lily is scheduled for her Baclofen pump surgery on Tuesday at 7:30 AM. She will go to Miller’s PICU for recovery. Please say a little extra prayer for her and that all goes well and that this procedure brings her relief and opens her up to much more progress in her rehabilitation.
God Bless,
Leslie

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