Kim Christiansen with 9News graciously told our story on the Denver news tonight. Our family anxiously gathered around the TV waiting for our big debut. Kim covered our story with the care and understanding of a fellow mother, and our comfort during the interview is evident in the finished product. You can tell Mark and I felt like we were with family, chatting about our sweet Maxwell and Riley like it was any other day.
Hello again! In continuation of Rare Disease Week, we want to talk specifically about the rare disease that affects our kids and families, SLC6A1 Epileptic Encephalopathy. SLC6A1 epileptic encephalopathy is a rare neurological condition in children that causes Read more…
SLC6A1 families from Kansas City, Iowa, New York City, Belgium, and the Netherlands all headed to Dallas to visit us! We had some belly laughs and created unforgettable memories. We all share a bond only Read more…
Today was too good not to share!!! I had a meeting with my congressional representative, the honorable Van Taylor to discuss rare disease advocacy at the state and national level. Rare diseases are considered too Read more…
1 Comment
Harriet Renner · February 22, 2019 at 4:37 am
Very, very touching. I pray for a cure and the money will come soon. Blessings, Harriet Renner