Joe Marquez
Thu Jan 30, 2014 8:53am

My friend Karen:
Please forgive my delay in responding. I am so devastated your long journey with Destiney Marie here on earth has concluded. She was so blessed to have you in her care. Many citrullinemia and TRUE kid familes have felt less alone by you sharing the ups and downs of raising her. I can't believe she's no longer with us. Your family and the entire UCD community has gained a guardian angel. I have huge survivor guilt. . .I feel like we started this together. Please be strong Karen. . .I always say that caring for a child with a UCD is the ultimate no-win situation. . .we all just try to navigate the path as best we can and eventually our luck and miracles run out. It is very much a win situation in that our hearts and souls are forever enriched by having known these sweetest of angels. I pray for you and your family. Time will lessen the blow but for now just do your best to keep on trudging. My love to everyone who is hurting now over this loss. If its not too hard. .please stay involved and continue your remarkable way of helping the others still on this journey.
- Joe

  • Destiney updateKaren Worley, Mon Jan 27 10:28am
    It is the hardest thing I've ever had to do is to inform you all that Destiney Marie lost her fight on 1/25.
    • losseileen, Tue Feb 4 5:02am
      Karen, I am so sorry to hear. Destiney was so blessed to have you in her life. And you have been blessed to have her.
    • Devastated — Joe Marquez, Thu Jan 30 8:53am
      • for joymarta, Mon Feb 3 4:57pm
        hi joe so did destint get transplanted I think this the site for transplanted kids that had ucd marta
        • RE: For JoeJoe Marquez, Tue Feb 4 10:13am
          Yes Marta. . .tragically when Destiney received her first liver transplant in December - it didn't work - so after surviving 4 days without a liver she received a 2nd liver and after a struggle to... more
    • My Heart BreaksJamie Rogers, Wed Jan 29 8:15pm
      My heart breaks for your loss. Our kids fight so hard. My God give you peace and strength and His grace see you thru. Destiney will always be remembered here and in my heart forever. Bless you Jamie... more
      • LossKaren Worley, Wed Jan 29 9:10pm
        Thank you Jamie. She fought so hard for six long weeks but her body just couldn't hold it any longer. Karen
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