Have you ever met a person that is delightfully different every time you are around them? Their countenance is just more pleasant than the average person you meet. They stand out in a good way. You can’t help but notice them.
We’ve all met remarkable people like that, wondering what exactly it was about them.
Now think of those souls that seem to have every reason to feel hopeless, yet they glow with promise. These are the special ambassadors that point everyone they come into contact with to Christ. They possess a Hope beyond all hope.
That’s the opportunity afforded those of us living with a child who has a rare disease. Frankly, we are often living everyone else’s worst nightmare. After all, isn’t that what pregnant women always proclaim when asked whether they’re hoping for a boy or a girl? “I don’t care which it is, just as long as my baby is healthy.”
In 2000, when my son was born, he wasn’t healthy by the world’s standards. Diagnosed with severe hemophilia less than 24 hours after his birth, we had every reason to feel grim and hopeless about our son’s future. Affecting only 17,000 individuals in the United States, hemophilia is considered to be a rare diagnosis. And as a rare disease, this bleeding disorder carries a hefty price tag for treatment. At the same time the bills have poured in over the years and the frightening medical emergencies occurred, God has given us a special platform to point to His glory in the midst of the crises. When people can hear me talking about my son using $30,000 per month in clotting factor yet still having a smile on my face, they take notice. This is the gift of redemption that comes here and now in the midst of our trials.
Rare disease provides an occasion to share a rare Hope in this dark world.
The last day of each February is World Rare Disease Day. On this day organizations representing many rare disorders unite to build awareness and support. Both my family and the ministry I lead have participated in this event almost since its inception.
While many look to cures or government programs for hope, we continue to invite those around us into something better. The Lord uniquely positions us to not only reach out to the typical world, but also to offer an eternal Hope to our fellow sojourners in the most unique of the special needs community.
Our family’s story may be a rare disease story, but our Maker calls every one of us to share our rare story of Hope that transcends any of our circumstances.
Honor Christ and let him be the Lord of your life.
Always be ready to give an answer when someone asks you about your hope.
1 Peter 3:15 (CEV)
Where is your family sharing Hope?
Snappin’ Ministries will be launching an online small group to read Wendy Heyn’s SHOW ME YOUR MIGHTY HAND in honor of World Rare Disease Day. To learn more about her book and other ways you can observe this day along with people of faith, please visit us on Facebook.