4 thoughts on “SWAT

  1. What beautiful boys you have. 🙂 I want to thank you so very much for your blog. It has been so helpful. The internet offers medical mumbo jumbo but not much about the reality of living with this disorder. My sweet cousin just had a precious baby girl a week ago. She has recently been diagnosed with Citrullinemia. They brought what they thought was a perfectly healthy baby home from the hospital. Two days later they took her back with breathing issues and a Citrullinemia diagnosis. Your blog has helped me to understand some of the challenges ahead. I was wondering if you knew of any Citrullinema support groups?

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    • Michelle! Thank you for your comment, I am so so glad that this blog is been some help. I know how much of a shock this all can be. Please, first and foremost, know that while the diagnosis is severe and quite a challenge, there is HOPE! Do not despair and please, tell your cousin to stay strong and know that we live in a wonderful and exciting time in medical history. There is hope, believe that!

      Yes, there are many support groups and your first stop should be the National Urea Cycle Disorders Foundation, making contact with our national Director, Cindy LeMons. She can be reached at cindy@nucdf.org. Feel free to send her an email, and please encourage your cousin (if she hasn’t already) to make contact as well. There is so much information available that is not always online, and Cindy will happily guide you and your family through this difficult time. There is a support group within the NUCDF called REACH UCD and it is a private, secure group to share with others.

      There are also support groups on Facebook, and the “Urea Cycle Disorders Worldwide” group is particularly active. It, too, is a private group so feel free to send a request to “join” and ask any questions. Also, on the right side of my blog are a list of other UCD blogs and if you would prefer to be connected with other families with daughters with Citrullinemia, I can get you emails for those families as well. Everyone is more than willing to help in any way that we can!

      You are not alone. Your cousin is not alone. Your cousin’s sweet girl is not alone. Whatever we can do to help, we do so willingly!

      If you, or your cousin, want to talk privately, I can always be reached by email at mindy411@hotmail.com or mindy.mooney@gmail.com. I am also on Facebook as Mindy Nield Mooney.

      Yours,
      M~

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