Jesse's cure for Friedreich's Ataxia

08/31/2026

I Wasn’t Scared of Middle School. I Was Scared of How the World Would Treat My Son. 💙

I remember Jesse’s first day of middle school like it was yesterday.

He had been diagnosed with Friedreich’s Ataxia at the end of elementary school, and by the time middle school started, he wasn’t quite the same little boy who had walked into elementary school years before.

His walking had already changed.

He would walk from wall to wall, reaching for something to steady himself. Sometimes he fell.

And as his mom, I knew something Jesse probably hadn’t fully realized yet…

People were going to notice.

That scared me.

Not because I was ashamed of Jesse. Never.

I was scared of the staring.

The questions.

The possibility of someone laughing.

The possibility of him being left out.

I couldn’t stop FA from changing my son’s body, but I was determined to do everything I could to make sure those changes didn’t take away his childhood too.

Thankfully, we had two incredible schools.

His elementary school and middle school worked together on his transition. I met with the middle school and told them about Jesse, about FA, about what was happening and what he was going to need.

And they listened.

The MDA clinic even came to the school and held an assembly about Jesse and Friedreich’s Ataxia.

They explained to his peers why Jesse walked differently. Why he might fall. What FA was. How his body could continue to change even though Jesse was still Jesse.

Then they opened it up for questions.

I’ll never forget one little girl raising her hand and asking if it was contagious. 😂

At the time I laughed, but looking back, I love that she asked.

Because she didn’t know.

And how could she know if nobody taught her?

That’s something I wish every parent raising a child with a disability understood:

Sometimes the staring isn’t cruelty.

Sometimes the questions aren’t disrespect.

Sometimes kids simply don’t understand.

So teach them.

Give them the opportunity to know your child beyond the wheelchair, the walker, the falls, the speech, the feeding tube, the disease or whatever makes your child’s life look different from theirs.

Because understanding can turn staring into compassion.

Questions into conversations.

Fear into friendship.

And differences into acceptance.

Parents, USE YOUR VOICE.

Ask for the meeting.

Talk to the teachers.

Talk to the principal.

Educate the students.

Don’t be afraid to say, “This is my child. This is what they’re going through. This is how you can help.”

You are not asking for special treatment.

You are asking for your child to have a chance to belong.

People can’t understand something they’ve never been taught.

And I’ve learned over the years that when we give people the opportunity to understand, so many of them WANT to.

Our children shouldn’t have to spend their school years explaining themselves alone.

We can help build the bridge between our kids and their peers.

I couldn’t stop FA from changing Jesse.

But I could make sure the people around him understood that underneath every change…

he was still Jess.

Still funny.

Still wanting friends.

Still wanting to be invited.

Still wanting to fit in.

Still just a kid who deserved to walk into school and feel like he belonged.

And every child deserves that. 💙

08/27/2026

A Different Perspective

Last night taught me something about myself.

I had spent a long day with my grandsons. I was tired, worn out, and when I realized I still needed to bathe Jesse and clean up his room, I was irritated, not at him just irritated.

I hate admitting that, but it’s the truth.

I remember thinking, I’m exhausted. I really don’t want to do all of this right now.

But I did.

I bathed him, got him cleaned up, straightened his room, and got him comfortable and back into bed.

And there he was… all smiles.

He looked so happy and said, “I feel great.”

That sentence changed my whole perspective.

Because while I was irritated that I had to do it, Jesse has to wait for someone else to be willing and available to do it.

I can shower whenever I want.

I can clean my room when it bothers me.

I can change my clothes, grab something across the room, or take care of my own basic needs without asking another person.

Jesse can’t.

And I thought about how hard that must be—to depend on someone else and probably know they’re tired, too. To need help with something as personal as bathing and have no choice but to wait.

Suddenly, my irritation felt very small compared to what he lives with every single day.

Caregiving is complicated. You can love someone more than anything in this world and still get tired. You can feel frustrated with what needs to be done while never being frustrated with them.

Last night I was tired.

But Jesse’s smile reminded me that what felt like another chore at the end of my long day gave him something he can’t give himself anymore:

the simple feeling of being clean, comfortable, and cared for.

And sometimes perspective comes in four little words:

“Mom, I feel great.” 💙

Jesse Strong

08/20/2026

“Strength isn’t always standing tall. Sometimes strength is waking up in a body that makes every day harder and still finding a reason to smile, love, laugh, and keep going.

Your hardest days do not make you weak—they reveal just how much courage lives inside you.”

08/18/2026

Some days, the sweetest moments are the simplest ones.

Jesse and his little kitty Simba have become quite the pair. There’s something special about watching this tiny little guy climb up beside him, completely unaware of Friedreich’s Ataxia, wheelchairs, limitations, or everything Jesse has had to fight through.

To this kitty, Jesse isn’t someone who needs help. He isn’t someone who is sick. He’s just his person.

Animals have a beautiful way of meeting us exactly where we are. No questions. No expectations. They don’t care what your body can or can’t do they just want to be close to you.

And judging by that smile on Jesse’s face, I think this little guy knows exactly what he’s doing. 🥹

FA may take away a lot of things, but it can’t take away moments like this. The companionship. The laughter. The love. The feeling of being chosen by one tiny orange kitty who apparently decided Jesse belongs to him now. 😂🐱

These are the moments I hold onto.

Jesse Strong. 💙
No one fights alone.

08/03/2026

08/03/2026

His heart was pounding. ❤️

On our way to get his kitten today, Jesse looked at me and said, “Mom, my heart is pounding.”

It wasn’t fear. It was pure excitement.

Living with Friedreich’s Ataxia means there aren’t many days filled with that kind of anticipation anymore. So today was different. Today he had something to look forward to. Someone who needed him just as much as he needed them.

Watching this tiny orange kitten curl up on Jesse’s lap for the first time melted my heart. It didn’t see a wheelchair or a disease. It found warmth, safety, and its new best friend.

Sometimes healing doesn’t come in the form of medicine. Sometimes it comes with four tiny paws, a loud purr, and a heart full of unconditional love.

I have a feeling these two are going to help each other through life’s hardest days.

Welcome home, little buddy. Thank you for giving my son something to smile about today. ❤️

07/06/2026

Hawaii has given me more than beautiful views.

It has given me time.

Time that somehow always felt impossible to find back home.

Jesse and I have been watching movies, talking about life, laughing over old memories, and just enjoying each other’s company. There was no agenda, no rush, no feeling that I needed to be somewhere else.

And somewhere in those quiet moments, I realized something…

This is what really matters.

Before we came, Jesse was excited because an old friend lives here. He talked about seeing him, smiled as he remembered the good times they shared, and hoped they would get to spend time together.

But the call never came, or a response when we text.

I was so upset but, It wasn’t anger I felt.

It was sadness.

Because it reminded me how easy it is for life to move forward for everyone else while someone living with Friedreich’s ataxia slowly becomes forgotten—not because people stop caring, but because life gets busy.

The truth is, I’ve been guilty of that too.

I’ve spent so much time taking care of Jesse that I’ve forgotten to simply spend time with Jesse.

This trip reminded me that the greatest gift we can give someone isn’t fixing their problems or finding the perfect words.

It’s making them feel remembered.

It’s showing up.

It’s sitting through a movie you’ve seen ten times.

It’s talking long after the conversation should have ended.

It’s reminding someone that even though their world has changed, they still have a place in yours.

Friedreich’s ataxia takes so much.

Let’s not let it take friendships too.

Because one day, none of us will wish we had worked one more hour or finished one more chore.

We’ll wish we had answered the phone.

Made the visit.

Watched one more movie.

Stayed a little longer.

Sometimes the greatest act of love is simply refusing to let someone feel forgotten.

07/05/2026

Daily Living with FA

Last night, while I was helping Jesse get dressed, something happened that caught me completely off guard.

As I was holding him up, he suddenly stood up as straight as he could and wrapped his arms around me.

He hugged me so tight.

It only lasted a moment, but time seemed to stand still.

It’s been so long since he’s been able to do that.

FA has taken so much from Jesse over the years—his balance, his strength, and so many of the simple things most of us never think twice about. But for those few seconds, none of that mattered.

It wasn’t just a hug.

It was a reminder that even when this disease changes a body, it can’t take away love.

I’ll carry that hug with me for a very long time. Sometimes the greatest gifts aren’t the big miracles we pray for. Sometimes they’re the unexpected moments that remind us the person we love is still right there.

Last night, I didn’t just help my son get dressed.

My son hugged his mom.

And that was everything.

💚

07/05/2026

This photo says more than words ever could.

Every day, someone chooses to carry what Friedreich’s ataxia tries to take away. Not because it’s easy. Not because they have to. But because love doesn’t measure the weight.

For families living with FA, this isn’t a special moment—it’s everyday life. Lifting. Helping. Adapting. Showing up. Behind every diagnosis is someone fighting to hold on to independence, and someone else quietly helping carry the load.

Jesse has taught us that strength isn’t always standing on your own. Sometimes strength is allowing someone to carry you when your body can’t, while never letting the disease carry your spirit.

To every caregiver, sibling, parent, spouse, and friend who shows up day after day—thank you. And to every person living with FA, know this:

You are never a burden. You are loved beyond measure.

💙

04/13/2026

“The First Neurology Appointment: What No One Tells You”

Walking into your child’s first neurology appointment after a diagnosis is something no parent is ever truly prepared for.

You walk in carrying more than just paperwork…
You carry fear. Questions. Guilt. Hope. Confusion. Love so deep it almost hurts.

You’ll sit there listening to words you’ve never heard before.
You’ll try to stay strong while your mind is racing ahead…
“What does this mean for their future?”
“Did I miss something?”
“Can this be fixed?”

Let me tell you something I wish someone told me:

You don’t have to have it all together in that room.

It’s okay if you forget what to ask.
It’s okay if you cry.
It’s okay if you feel angry, lost, or completely overwhelmed.

That appointment is not the moment you figure everything out…
It’s just the beginning of learning.

Write things down.
Ask questions—even the ones that feel small or repetitive.
Take someone with you if you can.
And if you leave feeling like you didn’t get all the answers… that’s normal.

Most importantly—
Your child is still your child.

The diagnosis didn’t change who they are.
It didn’t take away their smile, their personality, or the love you share.

You are still their safe place.
And now… you’re also their advocate, their voice, their strength.

You don’t have to be perfect in this.
You just have to show up… and you will.

One appointment at a time. One step at a time. One breath at a time.

And even on the days it feels too heavy—
you are not alone in this.