Today’s format was similar to yesterday: breakfast, seminars updating us on current research and legislation, and plenty of social time.
One of the amazing things that was shared was this: some of the leukodystrophy researchers who work for Hunter’s Hope were here for our welcome dinner on Wednesday; as they saw all of us with our babies and heard some of our stories, it apparently impacted them greatly. As with any career, you can become jaded and it can feel like just a job. Being with all of us increased their urgency to continue searching for a cure, better treatment, etc. because they realize that time doesn’t just cost money, it costs lives. I am so thankful for the brilliant minds who are working so diligently to stop these diseases from taking more lives.
Tori was having a rough time this morning and we think it was a tummy ache (note the outfit changes in the photos 😉). Thankfully, after a good nap, she was much happier.
After lunch the men and women split up for a couple of hours of sharing and processing. It was a powerful and emotional time as we each shared our stories and struggles of everyday life with a terminally ill child.
The extra special thing about today was that we were all able to participate in the Every Step Walk (you all helped us raise over $1,100 for Hunter’s Hope!) this evening.
Before the walk, balloons were released in honor of all of our babies and the ones who have gone before. They played the Carrie Understand one “I’ll See You Again” and it was such a powerful time as we watched the balloons float away until we could no longer see them.
We then all did a short walk and all got to be celebrated as we crossed the finish line.
After dinner we had some fun activities and more cuddle time with our babies.
Tomorrow is a free day for the families until dinner, so we will be taking it easy most of the day. Brennan is going to play golf with some of the other men in the morning, and I am having a massage in the afternoon 😄
We have been so blessed and encouraged by being here, and though we never wanted to be part of a community like this (who does?), we are so thankful for each and every person here and for the encouragement they provide to everyone else.
None of us can do this on our own, so having support like this is invaluable, and it is vital.
Even So, Joy 
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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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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