Maddison’s Message.

Yet another Urea Cycle Disorder angel. *sigh*  I found this story in my Google Alert messages today. My thoughts and prayers go out Maddison’s Daddy and Mommy, Eric and Sonja Van Leeuwe. Thank you for sharing Maddison’s story.

I admit that this part, “The Van Leeuwe family were active in trying to find ways to help Madison. They learned of an experimental treatment for disorders like Madison’s being studied in Germany, where newborns were injected with healthy liver cells to help get rid of the ammonia in their blood.” has piqued my interest. As in “can’t sit still for thinking about it” interest.

Corrigan can’t behave in Walmart. The flight to Germany would be exciting (Not!) more like stressful (WORTH IT!)

There will be a cure. Gene therapy could be the fix. I am hopeful. Never stop being hopeful.

For more information on Urea Cycle Disorders (or to make a financial contribution towards a cure!!) please visit the NUCDF. Your donation for Research Funding would be so appreciated. According to Executive Director, Cynthia Le Mons, “With your support, we’ve been able to increase UCD research 400% in the last 5 years! We have come light years-let’s keep the momentum going!

400%!!!!!!!!

Our Dream is for a Cure!

4 thoughts on “Maddison’s Message.

    • You are right. And Thank God for each day he lets us keep him here! We know that he is just on loan from up there and we never take that for granted!!!

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  1. Hi Mindy, I was so saddened to learn about Madison a few weeks ago, and I too saw this article yesterday. I wish that Madison’s medical team had reached out to our UCD experts for help. Things often go badly in rural areas where there is not a center for treatment of UCDs and they struggle to go it on their own. As you know, we can network these teams together with our UCD experts (like Dr. Hamosh) to make every resource available to them. Often infants are airlifted to one of the UCD centers. This often makes the difference between life and death. The hepatocyte transfer research mentioned in the article is actually in clinical trials right here in the U.S. at many of our UCD centers. Our UCD Consortium reached out to the German researchers (Cytonet, a biotech company) in Heidelberg three years ago, and the Heidelberg site is our newest UCD consortium site. The research is very experimental, not ready for primetime yet. There are other interventions that are being used successfully and I wish that Madison’s parents had had access to them and that her doctors had reached out. Dr. Arteaga sounds like she has wonderful intentions to raise awareness of UCDs in her rural medical circle. I intend to reach out to her to network her with our UCD experts and resources (it does not sound like she was aware of the tremendous network available now) and ask her to join our army to fight against this disorder. I will always keep Madison in my heart with our other angels, and keep pushing forward with our mission to END UCDs, in their names and for our angels here on earth, like Corrigan. Thank you for your support of NUCDF — you “get it” that this is OUR mission — all of our families who are touched by UCDs. Standing together, we WILL stop the devastating effects of UCDs.
    We missed you at our NUCDF conference. Hugs to all of you….

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