Perspectives of The Pompe World

The beginning stages of diagnosis of a rare disease is truly a desperate time.

Desperate for answers.

Desperate for understanding.

Desperate for a miracle.

Just desperate in so many senses of the word. So, what did I do? I traded sleep for the internet in my fresh postpartum state. I inhaled any information I had access to. I was 17 pages deep of consecutive purple hyperlinks full of the most confusing, heartbreaking and outdated information. It was too much.

So, I took to the platform I have such a love/hate relationship with: Facebook. I made a desperate post explaining what we had been faced with and BEGGING people to pray for my daughter. I set the privacy to public and my people DID WORK. This post was shared hundreds of times and along the way, had found itself to the attention of another mother who had a daughter with Pompe Disease. She was close and reached out to let me know she was here for my family. This was the most pivotal moment of those early days and truly the first time I had found hope. Through her, I had found the Pompe Community.

I was added to support/information groups, followed personal journey pages of other parents, awareness groups and connected to so many other important people. Patients, mothers, fathers, siblings, grandparents, providers and many more were a part of these small corners of Facebook and gave me a real life glimpse of this world. Never could I possibly repay them for what that did for my family. I could speak to informed people who lived this life and shared their journeys, offering their support when I needed it so badly. I found mom’s who were close by and joined a small group chat that was my saving grace. I messaged countless people who each helped me along my way in navigating such hard news. I remember every single one of them because they were that important to me at that time.

Now, two years later I am inspired by them, motivated by them, care about them and even love them. These are my people and I would not have survived that first year without them. We vent our frustrations, trade helpful advice and encouragement, cry together, share exciting news, ask questions and give answers to each other. We cheer each other on. We truly create bonds with each other because we are all in the same boat. Not the same place on the boat (some areas feel a bit rockier with the waves than others) but still-the same boat. I feel so attached to them and that is truly a blessing after a moment of feeling so alone in the world.

After something like this, the isolation often becomes just-almost-too-much. I needed this community to survive long enough to find some hope. I will forever be grateful to have found my tribe and hope.