Hunter’s Hope Symposium: Day Three

2 responses to “Hunter’s Hope Symposium: Day Three”

1. 

   jensaks

   July 11, 2015 at 1:50 pm

   I’m so glad you are getting to do this!! We had the privilege of attending conferences for Menkes Disease three separate years, and the impact was overwhelming. The first time we went it was the first time we’d ever met a child with the same disease our Nathan had. That alone was overwhelming. It’s so encouraging to share experiences, brainstorm together, and love on the other children.

   You mentioned the researchers. One year we had some of the clinical researchers from Denmark at our conference; their clinic was the place where all the genetic testing was done to determine the mutation, for prenatal testing, etc. They told us at the end of the weekend that formerly they had always recommended abortion to families when a child was diagnosed prenatally. (this is only done when a family has a history of Menkes Disease–it’s not a mandated test, just like Krabbe). However, they said after spending 3 days with us, getting to know our children, and seeing how we love them and how we all were doing, they were going to change what they tell families. They said they could see that this is not a tragedy for most of us. They could see beyond the diagnosis and that most of us were rising to the occasion and felt privileged to have our children in our lives. They took a photo of all of us to put on their wall of their clinic “to remind us who we are working for.” That brought me to tears–our children are a silent witness to God’s purpose and love, and even these doctors were experiencing that.

   Of course, there are families for whom a fatal diagosis is the ultimate tragedy, and their marriages and lives are ruined. We aren’t blind to that. Our prayer was always that we could be a witness to God’s love in our lives through our family. We LOVED being Nathan’s parents, and of course also Emilie’s and Matthew’s parents as well. We weren’t perfect, and of course we had our down times and times of fear, but our goal was to let our hope and our love show others that not only could you survive a situation like this, but you could have fun doing it and consider it a privilege and a joy. Meetings like this can be a great opportunity for us to impact other families who aren’t doing as well–to give them hope and show them ways to cope a little better.

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2. 

   Angela Lyon

   July 11, 2015 at 2:16 pm

   Thank you so much for sharing this journey with us. I tear up seeing these photos and all the love from all of the Mom and Dads as they hold all of the babies. I truly admire your strength and courage.

   Angela Lyon
   Red Bluff, California

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