“Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up.” (Ecclesiastes 4:9-10, NIV)
It didn’t take long after our son was born and diagnosed with Hemophilia A – Severe to grasp that this was not your average diagnosis. Discovering that only about 17,000 males in the United States had this disorder surprised us. Receiving the first bill for his clotting factor was certainly a shock too. We would soon learn that at his full stature, a $300,000 per year cost for specialty pharmacy would not be at all unusual. Our boy had been diagnosed with a rare disorder.
It didn’t take long for an active, engaged parent like myself to become informed and involved. As a result, I was invited to be one of the founding members of the legislative advocacy committee for our local hemophilia foundation chapter. In that role, I was able to unite with those across our nation, learning, linking arms in common purpose, and making our concerns known. Still, we only represented a small population in a large ocean of Washington visitors.
The good news is that, over time, I discovered national organizations that unite families with rare disorders. While my son’s hemophilia put him in a community of only 17,000 other US residents, rare diseases affect an estimated 30 million or 1 in 10 citizens. We could unite our advocacy efforts with that of my nephew’s Cystic Fibrosis community and our friend’s Angelman Syndrome and our other friend’s hydrocephalus.
This is exactly what Rare Disease Day is all about! Every year, on the last day of February, time is dedicated to advocacy for, awareness of and recognition of the challenges involved with rare diseases. People are informed that a rare illness is one that affects under 200,000 US citizens and falls into a category of approximately 7,000 diagnoses. And attention is placed on The Orphan Drug Act of 1983 which gives privileged government treatment to expensive specialty pharmaceuticals that are used to treat these rare diseases.
So what does this all mean for the church? Once again, we need to open our eyes to the suffering in our midst. While families can appear to be “normal” or problem-free, living with these diagnoses are a life-long challenge. Endurance is an ever-exhausting battle. And the financial state of these families, despite government aid, can be extremely overwhelming. In fact, because these diagnoses are so rare, these people can be the most marginalized of the marginalized. Like being lonely in a crowd, those with rare diseases can feel isolated even in the midst of others.
But just as there is strength in numbers with uniting all of those with rare diagnoses, there can be strength in numbers through the uniting of the Body of Christ. When we simply operate under the premise that there is far more than meets the eye, we have taken a giant step towards helping these individuals. We all know that Jesus said, “…if you give even a cup of cold water to one of the least of my followers, you will surely be rewarded.” (Matthew 10:42, NLT) So, many small gestures of compassion are required to support these families in our midst. It may be a meal provided clear out of the blue. Offering to watch the kids for a while may give a much-needed break. The almost-lost art of popping a card in the mail to let people know you’re praying for them can uplift at just the right time. Benevolent funds offering help with groceries, bills and the like may need to be extended to these families more than once. And spiritual encouragement through studying together God’s promises regarding suffering, patience, endurance and His constant care are a lifeline that must not be neglected. Don’t forget financial donations to patient assistance organizations for these rare diagnoses either. They can help supply life-saving treatment to those with rare diseases.
If we are truly Christ’s ambassadors, we must open our eyes to the least of “the least of these”! Why not do some brainstorming with your church or organization to see how you can reflect His hope and glory in a fresh way to this challenged population in our midst today.For more information on rare diseases, visit NORD, the Children’s Rare Disease Network or the RARE Project.