Tag: rare disease journey

Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Day He Ran – Our Beach Miracle

Brandi C

The Day He Ran – Our Beach Miracle

I can still feel the sand under my feet and I can still remember The Day He Ran – Our Beach Miracle.

The sun was setting, the breeze was just right, and we were finally on a family vacation, sort of, after what felt like a lifetime in hospitals.

H sat on a blanket, watching the waves, surrounded by siblings and snacks.

He hadn’t walked unassisted in almost a year.

We brought his wagon to the beach to help transport him around. We expected him to stay seated.

But then…

He Stood

After much sitting and playtime in the sand and the water. I quickly carried him up the beach, at dusk, and sat him on a beach towel. He was all snuggled up as the sun was setting and I was getting a few quick videos and pictures.

Then.

He stood.

And not just stood.

He ran.

Across the sand, toward the ocean—his body moving like it remembered how, even though it shouldn’t have. I stood in holy awe as my child, who had to relearn everything, ran straight into the water like he’d never been sick.

It wasn’t just steps. It was a miracle.

“Against all hope, Abraham in hope believed…”
— Romans 4:18

No One Can Tell Me Otherwise

Doctors can say what they want.
Science can shrug.
But I know what I saw.

I saw God.

That day, I saw healing in motion.

I saw the fire in his eyes, the joy in his shout, the water splash around his feet.

In that moment, I saw the moment heaven touched earth for my son.

💛 Heartbeat Moment

We still face hard days. Flare-ups. Setbacks. Fears.

But that moment reminds me what’s possible.
God doesn’t always heal the way we ask—but sometimes?
Sometimes He does.

And I’ll never stop praising Him for the day my boy ran into the ocean.

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Faith Journey, Medical, Opsoclonus Myoclonus Syndrome

The Long Road to a Name

Brandi C

The Long Road to a Name

There’s something uniquely painful about being told a hundred different things, only to be left holding nothing solid. H’s journey has been filled with more questions than answers—and more misdiagnoses than I care to count. This is a small snippet of what it took to finally land on something we could name.

But even more than the name…

This is about what we know for sure.

June 6, 2017 — Life Changed While He Slept

Hospital 1

  • Bloodwork and urine tests

  • Diagnosis 1: Strep

  • Sent home with antibiotics and the promise he’d be better in 10 days

June 7, 2017

Hospital 2

  • MRI, bloodwork, urine

  • Diagnosis 2: Acute Cerebellitis Ataxia

  • Viral, temporary, “he’ll be fine in two weeks”

June 8, 2017

Hospital 3

  • MRI, X-rays, ultrasounds, lumbar puncture, EEG, more labs

  • No diagnosis

  • Vague mention of a degenerative neurological disorder

  • No plan. No idea what to do next

June 14, 2017

Diagnosis 3: Opsoclonus Myoclonus Syndrome (OMS)

  • Began high-dose steroids and first dose of IVIG

  • One week later: chemo

  • Two weeks after that: more chemo

  • Monthly IVIG through April 2018

  • ACTH injections (Dec 28, 2017–Feb 27, 2018)

April 2018

Hospital 4

  • Confirming OMS diagnosis, fearful of degenerative neurological process

  • Repeated nearly all tests: MRI, X-rays, LP, ultrasound

Final Dx from Hospital 4: OMS

May 2018

Back to Hospital 3

  • New idea: Maybe not OMS, but Spinocerebellar Ataxia (SCA)

  • Degenerative. Genetic. No cure. No treatment.

  • He still wasn’t walking

June 2018 — A New Day

  • Unconventional treatment

  • Five days later:
    He. Was. Walking.
    On the beach.

“Now faith is confidence in what we hope for and assurance about what we do not see.”
— Hebrews 11:1

July 2018

Diagnosis 4:

February 2019 — Hospital 5 (UPMC Pittsburgh)

  • ATLD1 diagnosis debunked

  • Returned to third diagnosis: Opsoclonus Myoclonus Syndrome

  • Restarted treatment

And then… blah blah blah.

Because honestly? It’s been years of back and forth. Years of new guesses, new scans, new terms, new fears. So many months, so many procedures, so much medicine, and so much exhaustion—for him, for us.

What I Know for Sure

  1. He does not have Friedrich’s Ataxia.

  2. He does not have a mutation on MRE11A (ATLD1).

  3. I finally got a straight answer from Dr. Thakkar in Pittsburgh.

  4. We have good days and bad days.

  5. I am an expert on my son, and I will not waver just to satisfy a doctor’s pride.

  6. He is cute.

  7. Best. Smile. Ever.

  8. He is also a turd.

  9. I will not compromise my faith.

  10. God. Is. Bigger.

“He is before all things, and in Him all things hold together.”
— Colossians 1:17

I’m tired of man telling me what this is or isn’t when they don’t even know. These doctors—most of them—have never even seen this. They are learning on him. And we’re the ones who carry the cost of that learning.

But I am not bitter.

I am anchored.

“But the Lord stood with me and gave me strength…”
— 2 Timothy 4:17a

Because we don’t walk alone. We never have.

💛 Heartbeat Moment

This isn’t just about a diagnosis. It’s about a child whose life changed in a moment, and a family who refused to let go of faith. Standing on the truth, even when no one else sees it yet. It’s about choosing joy—again and again—and declaring that our God is still good.

H is more than a list of symptoms.

He’s more than a diagnosis.

He is living proof that God. Is. Bigger.

💛 If you’re navigating life’s hard places and need a safe space to heal, grow, or just breathe—Circle of Hope Counseling Services is here for you.

We offer trauma-informed, faith-filled therapy for individuals, couples, and families.

📞 Reach out today to schedule your first session (KY residents only) or learn more: Circle of Hope Counseling Services.

You don’t have to walk this journey alone. Hope starts here.

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