My story for Rare Disease Day 2024
Pompe disease is considered a rare genetic disease, affecting somewhere between 10,000 to 40,000 people worldwide, ranging from Infantile Pompe to Late Onset Pompe. When I was diagnosed, it was known as an incurable disease for which there was no treatment nor hope of a future treatment since little to no research was being done at that time.
So, way back in 1992, after my positive diagnosis for Pompe Disease, Tom and I were talking/thinking about what might be ahead, and this was my decision and life-saying: I can let it make me bitter or I can choose to let it make me better. And because I also chose to have faith in God’s plan, rather than in my own–even though I didn’t understand WHAT in the world was happening to me or WHY God would choose to allow it in the first place, and in the second place, choose to let it REMAIN in my life, I’ve chosen to let it do its work of making me a better person inside. Why did I decide to choose that? Because I know without a doubt that God is good (and I know myself that’s a bitter pill for some to swallow, because I used to be right there with you. A scoffer of anything to do with God! Why, He’d NEVER done anything for ME, and so on.) But when life had beaten me down and pretty much broke me, I heard the story about the God who had a plan to let his only perfect Son, Jesus, take the punishment for my sins, to suffer and die for MY sins, and then with resurrection power rise from the dead after 3 days; and because of His resurrection, to raise everyone who has the Spirit of God in them also, well, it changed my heart and mind. I had heard bits of the story before but was influenced by others to not believe. But it was then I realized GOD is God and I am not. It was then I knew I wanted to spend the rest of my life with him. His way, whatever that might mean. That is my story. God is the reason I can choose to be better, not bitter. I am human though. I still can get impatient because He hasn’t let me have MY way. But, I come back to Him and His way because His way really IS best. And I also know He loves me; and that isn’t going to change.
(NOTE from Sherry: You can find more information about Pompe Disease in the Rare Disease database.)
Much more to Sally’s story.
For one, she’s the one of the few who don’t “walk away” when I begin to pontificate. Of course, since she is in a wheelchair …
On another note she has learned how to pray (few do, really). Miracles have been known to happen when she does.
And toast. You should ask her about toast.
Thanks, Sally, for sharing.
Great background, Don! (She and I have a couple of things in common: we both enjoy your pontifications, and I love toast – whether her story means she loves it or not!) Hope to meet her someday, I really enjoyed her writing!