Welcome Family and Friends,
Sarah and I decided to create this site to update you on Sam.
First and foremost, Sam is a child of God loved by us, by Jesus, and many many others. Through baptism, God has claimed him as His own and Sam has been blessed now with new life and will be blessed more fully when God calls him home one day. It is only because of God’s promises, God’s grace, and the strength that He provides, that we can share with you this update on Sam.
As of last Friday (Jan. 17th), we finally heard back from the doctor on a big test that we had done. After nearly a year and a half, we received confirmation on a diagnosis. However, this news was and is extremely bittersweet and is difficult to hear. Sam has been diagnosed with NCL syndrome which is short for Neuronal Ceroid Lipofuscinosis. In older children, it is more commonly known as Batten’s Disease. There are four types of NCL and it is categorized by the age at which someone starts showing symptoms. Sam falls somewhere in between Infantile and Late Infantile NCL, but most likely has the infantile type. While research is still being done, there are no known cures or treatments that can either halt or reverse NCL. Rather than spell out all the details of this syndrome, here are some links that explain it in more detail, including the affects of the syndrome and what it most likely will mean for Sam.
Words cannot due justice to the amount of love and support that we have received from family, friends, and the community at Memorial Lutheran Church. We know that this news breaks your hearts, as it does ours, and I’m sure that many of you will want to know how you can help Sam. We have an appointment with our genetic doctors in a few weeks. We are hoping to hear more detailed information from them on how to best care for Sam moving forward. In the meantime, the biggest thing you can do for us and Sam is to pray and continue to love him as we do. Pray for healing, if it be God’s will. Pray for comfort for Sam and for strength for Sarah and I.