The Stop Sign in Aidan’s Genes (PURA GENE)

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15 Responses

  1. I’m sure it must be such a relief to have some answers on Aidan’s condition! Thanks for explaining it to those of us who may not understand much genetics jargon. Good luck in the next steps of determining the best plan for Aidan! At KIT, we’ll be thinking of you!

  2. Heather, this is exciting news even if it isn’t immediately helpful. I promise to pass this along as I know many parents whose children have various development issues. I will also be going back and reading all your writings when I can.
    Aidan has your family’s smile, which I love so much. It is so joyous!

  3. mml46 says:

    Thanks Heather for explaining this so well. I am glad you have some answers to some if the questions and well done for being so persistent and enquiring, it will always stand you in good stead. Love to you all and look forward to our autumn meet up! I love the picture and hope Aidan is mobilising well.

  4. Dear Heather, I’ve been keeping up with you through Jessica, and I am so grateful to Jen for posting this on Face Book. You have always been special and strong, and I hear it in your writing — some of your mother’s genes, perhaps? Be assured of my continuing prayers for all of you — Love, Ede-Jo edezjo@sbcglobal.net

  5. Kristi Campbell - findingninee says:

    I’m glad you’ve gotten some answers about your beautiful boy and I know that more and more answers will be available to that scared mom in the NICU because of what you’re doing. I look forward to hearing what all of this means for the next steps!

  6. mom4jules says:

    This is a cause special to my heart as well. My daughter Brooke has Aicardi Syndrome but there is no known cause. So much research is going on to try and find out the genetics behind it. Hugs and prayers!

  7. Carrie says:

    I enjoyed reading your post about when Aidan was born and these posts about his genetic makeup. It’s a new real side to him and good for us who are with him all day to know about.

  1. September 5, 2014

    […] a fifth grader but only by a little bit when it comes to science. With the results of Aidan’s genetic testing in, I’ve been trying to gain a better grasp on the subject. Sure, I aced biology in high school […]

  2. October 15, 2014

    […] I’m very excited to be on the cutting edge of science and to have if not a name than at least a gene to possibly explain Aidan’s medical issues. Something big is happening here. I’m […]

  3. November 14, 2014

    […] insurance at a reduced cost by the lab. It was discovered that he has two genetic variants on his PURA gene on his 5th chromosome. While it is not officially a diagnosis because it has not been thoroughly […]

  4. November 14, 2014

    […] insurance at a reduced cost by the lab. It was discovered that he has two genetic variants on his PURA gene on his 5th chromosome. While it is not officially a diagnosis because it has not been thoroughly […]

  5. December 12, 2014

    […] a fifth grader but only by a little bit when it comes to science. With the results of Aidan’s genetic testing in, I’ve been trying to gain a better grasp on the subject. Sure, I aced biology in high school […]

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