This past Monday was Rare Disease Day. I’m sure for most of us this isn’t one of those days we have highlighted on our calendar. But for over 300 million people living on our beautiful planet, Monday was a reminder that their loved ones’ disease is seen as an “orphan” disease. Their disease is so rare that there are less than 200,000 other people with the same condition and with no drug companies interested in adopting them to discover and develop a treatment.
David’s disease was considered a rare or orphan disease. Batten Disease affects 2 to 4 out of every 100,000 children in the United States. The day we got his diagnosis we were told his disease is progressive, untreatable, and fatal. I’m grateful there is a day that reminds all of us that there are moms and dads and brothers and sisters and grandparents and uncles and aunts who need to be reminded they are not alone. While there is still no cure for Batten Disease, I still have hope there one day will be a cure. I am motivated to pray for a cure. I am challenged to financially support. I am inspired to tell someone whose loved one has an orphan disease that they are not alone. I’m grateful for Rare Disease Day.
Often when we hear the word rare, we think of words like uncommon, unusual, unfamiliar, out of the ordinary, or atypical. Sadly we all too often see the person or child through these words, and it affects how we value them or talk about them. Thankfully there are some other amazing words that define rare. Some of my favorites are exceptional, outstanding, unparalleled, matchless, superb, unique, and exquisite! Your child is exceptional! Matchless! Exquisite! That is who David was. That is who your child is! They are masterpieces both in our eyes and in the eyes of God.