We are a family of seven—soon we will be a family of eight. We are on an unexpected path that started almost five years ago with the birth of our fifth child.
Evangeline was born several weeks early; that was our only notice that our lives were about to change forever. Evangeline has a mutation on her KCNT1 gene that causes unstoppable seizures. In 2017, there were only four known cases of this mutation in the world.
Life turned upside-down. Faith, family warmth, and love sustained us. After the first year, things stabilized, and we decided to take our now-two-year-old off of hospice and work to make her life as meaningful as possible. She still has fifty seizures a day, but now we know of 60 other cases in the US and 250 worldwide. We have a small community!
People do not get to choose the hardest parts of their life—only their way forward. By God’s grace, our family understands that the world is broken and needs us to serve and love each other. This is not the end of the story. As a result of our life-changing encounter with an ultra-rare genetic coding, we are going to adopt! There is a little girl in Bulgaria who has the same KCNT1 mutation as Evangeline. We have the experience and the medical team in place to deal with this hard medical condition, so we are looking forward to bringing another child who is medically fragile into our family.
Life is hard, but we are resolved to live.
Room to Bloom’s mission is to promote the beauty of adoption and to ascribe dignity to people with Down syndrome and other special needs. We do this by partnering with organizations that are dedicated to orphan care and adoption advocacy, strengthening families who have children with special needs, and giving a voice to the vulnerable.