08/30/2025
✨ By God’s grace, yesterday we received the BEST news: Mackenzy’s biopsy showed NO cancer and no indication that it could develop into cancer. 🙌💖
We are clinging to this verse in gratitude:
“I will restore you to health and heal your wounds, declares the Lord.” – Jeremiah 30:17
Tomorrow marks the last day of August—and the last day of Autoinflammatory Awareness Month. The picture below shows Mackenzy surrounded by just 3 years’ worth of the shots she’s taken to treat her autoinflammatory disease, CAPS (Cryopyrin Associated Periodic Syndrome).
💡 What to know about Systemic Autoinflammatory Diseases (SAIDs):
• There are 50+ known types, with new ones still being discovered.
• They are different from autoimmune diseases:
o Autoinflammatory = overactive immune system you’re born with (innate)
o Autoimmune = overactive immune system you develop throughout life (acquired)
• Most have a genetic root, but some are clinical (symptoms without a known gene) or mosaic (only part of the DNA carries the mutation, like Mackenzy’s case).
• Mackenzy was misdiagnosed 12 times (including 2 terminal conditions), saw doctors in 3 states, and endured 542 days of daily fevers before her correct diagnosis.
• CAPS is considered a 1 in a million diagnosis—not because it’s truly that rare, but because too many doctors don’t yet recognize autoinflammatory diseases.
• Common factors across most AIDs:
1️⃣ Immune system dysregulation
2️⃣ Recurrent inflammation throughout the body
3️⃣ Risk of organ damage if untreated
4️⃣ Significant pain
• Mackenzy’s medicine is an injectable biologic every 4 weeks that costs $17,700 per ml. It suppresses her immune system to protect her body—an incredible blessing, but one that comes with increased risks (like difficulty clearing simple infections and an increased risk of cancer).
📢 We share this not only to celebrate yesterday's answered prayers, but also to spread awareness. Despite the growing number of diagnoses, too many families still face years of confusion, misdiagnosis, and suffering before finding answers.
💬 If you or someone you know has unexplained fevers, rashes, or joint pain, please reach out or pass along my contact information. I’ve gained a lot of knowledge through our journey, and just as others helped us, I consider it an honor to walk alongside other families and help them gain the resources they need.
Together, we can spread awareness, support research, and celebrate God’s blessings in the victories along the way. 🧡
