13 thoughts on “Wordless Wednesday: Shocking Development (in morning oatmeal)

  1. Dear Corrigan’s Mommy and Daddy,

    I am a mom of two wonderful kids who were born in ’06 and ’08. My two kids were picked up on a State Newborn Screening and were the only two in the State identified on the screening for Citrullinemia. I just cry anytime I read other people’s stories because I have been through similar things (twice). Thankfully the Citrullinemia screen was just added to our state screening a few months before our first child was born. This is something that not all states look for and parents of babies who did go to heaven within the first week of life push very hard for these tests to save the lives of little ones. I am eternally grateful to them and to parents like you who are working to bring awareness to people. Something else that is bringing a lot of awareness is the Hana Poling case of vaccines and autism in kids with underlying problems. I have seen a lot of research warning parents to be very very cautious about medications like Tylenol and even vaccines that can overload the already low functioning livers of these little people. Personally my oldest started having severe reactions to vaccines so we decided as a family to stop and she started to recover but I am afraid that if we continued her second birthday may not have been a delight. The biggest challenge for me and other parents who have talked about raising a child with inborn error in metabolism is the fear that the worst will happen. I try to remain faithful but that little voice of fear when they are sick creeps in.

    I like to reach out to other families with kids with Citrullinemia for communication with others who can understand what it is like with raising Citrullinemia kids. It was hard for me to hear the confirmation that my second child also has it. We are now over in France and to our surprise the medication they take is significantly cheaper and the assistance is higher. On top of the Citrullinemia drama we also had to evacuate our home because of a mold problem stemming from a faulty foundation that lead to mold contamination of our home. Our children could not stay in that home as it was a high risk situation.

    We are also schooling from home but since our kids have never had a metabolic crisis we are afraid that one day it will come crashing down on us. Your little guy Corrigan seems to be doing really great and you seem like a tower of strength! I thank Yah for you and for your blog from those of us out there who feel alone in this! Keep up the good work…and it is Good Work that you are doing. May Yah bless you and your family!

    -all4Yah

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    • Amanda,
      I am so happy that you left a comment! What a blessing that Newborn Screening caught your children’s Citrullinemia and that neither experienced catastrophic newborn crisis! Newborn screening is such a very important part of protecting the brains of those affected! Sadly, we did not have that available for Corrigan, and he has suffered the affects of that, but we are SO fortunate to still have him here with us and all of the amazing joy that he brings our family!

      Please, do not feel alone out there! The internet has its share of evil but the good and beautiful part of the world wide web is that it brings people, like you and I, together in a way that we would have never been able to facilitate a decade ago. The very reason that I decided to continue this blog, after the initial Corrigan sickness, was to connect with others going through the same things that our family was experiencing. It is not hard to find good information on UCD’s if you have a computer and the time to look, but it IS hard to find good family support outside of conferences.

      If you ever want to chat more please feel free to email me at mindy411@hotmail.com.

      with love, Mindy

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