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Mackenzy Jo's Quest, Monroe, MI (2025)

From now on, all of Mackenzy Jo's medical update will be posted here

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. 🧡

06/30/2025

☀️UPDATE: She is out of the MRI- very sleepy, enjoying some iHop then home for a nap. THANK YOU for all the prayers!

It’s Brain and Orbital MRI/MRA day! 🧠👁️

Lots of prayers appreciated for our Mackenzy Jo as she tries her best to make it through this 1 hour MRI/MRA (unsedated and while being nauseous 🤢 from nerves) so that we get stellar images for the surgeon to remove all that needs to be removed. Also prayers for her medical team to have patience with her as she is beyond nervous today.

06/03/2025

Mackenzy and her current medical mystery.

Being parents of a child with a rare disease has shaped us in ways that sometimes we don’t even realize.

When other parents take their children to doctor appointments and the doctor says
“Well it’s ______ of course!” - they have the luxury of believing it.

Dave and I do not have that luxury. We have been traumatized to ask “why” and “how” about everything. We have been traumatized to challenge every medical opinion and have learned how to read dozens of medical literatures on each thing that it could be.

Other parents can accept that when their doctors hear hoof beats they think horses.
In our experience- it’s almost never horses- it’s zebras.

1 week ago today at Mackenzy’s yearly eye exam her doctor discovered a growth in her lower eye. After some very concerned doctors- today we were expedited to Kellogg Eye center.

They heard hoof beats.
They thought horses.
They didn’t take kindly to our questions about- if they had considered Zebras.

In a flashback to 2018 we’re reaching out to family and friends with Mackenzy’s story.

We know it only takes one set of the right eyes to make the right diagnosis.
And it’s not that we absolutely disagree with the Kellogg eye diagnosis- but we have doubts. And in all of our experiences our doubts have not failed us. They have helped us feel confident in her diagnosis and her treatments. They have helped us to accept, when needed, that even herds of zebras house a horse every now and then.

Please see the photo attached with this post. Please feel free to share it, but please tag us if you do so that we can benefit from any information offered.

Some information that may be helpful when making an educated guess:
- Mackenzy is 7 years old, will be 8 in July
- She is on 150 mg of Ilaris every 4 weeks and is thus considered medically immunosuppressed
- She has Cryopyrin Associated Periodic Syndrome (auto inflammatory disease)
- The mass is in her lower left eye- on the sclera/conjunctiva not the lid. You have to pull down the lid and have her look up to see it
- She has no pain associated with it, and we didn’t know it existed until they found it on exam
- She did report seeing flashes of light and floaters
- No other inflammation (internally or externally) noted
- The image is from Slit Lamp Photography
- I will also include a collage of photos we’ve taken daily for the last 6 days
Looking for recommendations for a spectacular pediatric ocular oncologist or pediatric ophthalmologist. Willing to travel within Michigan or Ohio.

Thank you in advance.

07/04/2023

Mackenzy Jo is 6 today!

A very short CAPS update- the Ilaris is still our miracle drug 🩷

As Mackenzy grows it’s an ever evolving process to figure out her best dosage- so she still gets fevers and flares a few days before her dosage is due.

In August we’ll take our yearly trip to Cincinnati to see her Rheumatologist.

Mackenzy is hoping she has made enough progress with her SMO’s and Physical Therapy to correct her hypermobility in her knees and her toe walking (both side effects of autoinflammatory diseases) to get cleared to participate in Ballet- she has been so patient in waiting!

Overall, our CAPS girl is Thriving! And we could not be more blessed 🩷

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Mackenzy Jo's Quest