Jesse's cure for Friedreich's Ataxia

Jesse's cure for Friedreich's Ataxia Jesse is 25 years old and is fighting Friedreich's Ataxia, He was diagnosed at the age of 12. There is no cure for this life changing disease.

Friedreich's ataxia is a life shortening condition that causes progressive damage to the nervous system resulting in symptoms ranging from muscle weakness and speech problems to heart disease. Degeneration of nerve tissue in the spinal cord and of nerves that control muscle movement in the arms and legs. Most people with Friedreich's ataxia also develop scoliosis and are confined to a wheelchair.

03/24/2026

Last night shook me today I am angry but grateful.

Jesse choked while eating dinner, and for a moment, everything stopped. It’s not the first time but this one was different. This one was scary.

I think sometimes, because I live this every single day, I adjust… I adapt… I keep going. But moments like that remind me how fragile things can be. How quickly something routine can turn into something terrifying.

Watching your child struggle for something as simple as swallowing—it does something to you. It puts a knot in your chest that doesn’t go away when the moment passes. Even after he’s okay, even after the calm comes back… it lingers.

This disease doesn’t just take the big things. It chips away at the little, everyday things we all take for granted—walking, talking, eating and I am grateful he is ok but just pi**ed off that he has to go through this 😢🤬😫❤️

The Things They Don’t Tell You About Friedreich’s AtaxiaThey tell you it’s rare.They tell you it’s progressive.They tell...
02/22/2026

The Things They Don’t Tell You About Friedreich’s Ataxia

They tell you it’s rare.
They tell you it’s progressive.
They tell you about wheelchairs, heart involvement, coordination loss.

They tell you the clinical words.

What they don’t tell you…

They don’t tell you about the silence after the diagnosis.
The kind that sits in your chest at 2 a.m. when everyone else is asleep.

They don’t tell you about the guilt.
The wondering.
The replaying every moment in your head asking, “Did I miss something?”

They don’t tell you how exhausting it is to be strong every single day.
To smile for your child.
To research like a scientist.
To advocate like a lawyer.
To pray like your life depends on it.

They don’t tell you that grief comes in waves —
even when your child is still right there in front of you.
Laughing. Living. Breathing. Beautiful.

They don’t tell you how much courage your child will teach you.
How strength can exist inside a body that struggles.
How resilience can shine brighter than fear.

They don’t tell you about caregiver burnout.
The quiet tears in the car.
The moments you feel frustrated — not at them — but at the unfairness of it all.

They don’t tell you how lonely it can feel…
Until you find other FA parents who just get it.
Who speak the language of appointments, adaptations, hope, and heartbreak.

They don’t tell you that love grows deeper.
That small wins become victories.
That you celebrate things other people never think twice about.

They don’t tell you that your child is not their diagnosis.
That FA may affect their body —
but it does not define their spirit.

They don’t tell you that you will become stronger than you ever imagined.
Not because you wanted to be.
But because you had to be.

And they don’t tell you that even in the middle of something this hard…
there is still joy.
There is still laughter.
There is still purpose.

FA changes a lot of things.

But it does not take away love.
And it does not take away hope.

💙 Jesse Strong.
💙 FA families — you are not alone.

To the FA parents who are barely holding it together right now…I see you.I see you scrolling at 2 a.m. looking for hope....
02/17/2026

To the FA parents who are barely holding it together right now…

I see you.

I see you scrolling at 2 a.m. looking for hope.
I see you watching your child walk across a room and wondering how long that will last.
I see you memorizing their laugh because somewhere deep inside you’re afraid of losing it.

This disease is cruel.
It steals in inches.
It doesn’t knock loudly — it just quietly takes… balance, strength, stamina, independence.
And every time it progresses, it feels like diagnosis day all over again.

No one prepares you for this kind of parenting.

You become a nurse.
A researcher.
An advocate.
A therapist.
A warrior.
And somehow you’re still expected to just be “mom” or “dad” on top of it all.

Some days you are strong.
Some days you are angry.
Some days you are numb.
Some days you are terrified.

All of those days are allowed.

Loving a child with Friedreich’s Ataxia means living in two worlds at once —
Gratitude for today.
Grief for tomorrow.

And that is exhausting.

But here’s what I need you to hear:

Your child does not need a perfect parent.
They need you.
Your love.
Your presence.
Your steady hand when theirs feels unsteady.
Your belief in them when their body feels unpredictable.

They are not their diagnosis.
They are still funny.
Still stubborn.
Still brilliant.
Still full of light.
Still capable of impact in ways this world hasn’t even seen yet.

FA may change their body.
It does not change their worth.
It does not change their purpose.
And it does not cancel their ability to move hearts.

You are doing better than you think.
Even on the days you cry in the shower.
Even on the days you feel resentful of the constant caregiving.
Even on the days you want to scream, “This isn’t fair.”

It isn’t fair.
But love like ours?
It is powerful.

And we are not alone.

To every FA parent reading this —
Breathe.
Just for a minute.
You don’t have to solve the future tonight.
Just love them today.
Sit with them.
Laugh with them.
Hold them.

We will carry the weight together.

Stronger than we ever wanted to be.
Braver than we ever planned to be.
Loving harder than we ever knew we could.

FA picked the wrong families.

Because we don’t quit.

02/08/2026

Anticipatory grief

Is the emotional pain and mourning that happens before an expected loss — usually when someone you love has a serious illness or a life-limiting condition.

It is grieving the possibility of death or loss while the person is still alive.

It can include:
• Sadness about the future
• Fear of what’s coming
• Anger or helplessness
• Guilt for grieving “too soon”
• Anxiety about changes already happening
• Mourning the life you thought you’d have together

Anticipatory grief isn’t giving up hope.
It’s your heart trying to process what it knows may be coming.

You can love someone deeply, care for them fiercely, and still grieve the potential loss at the same time. Those feelings can coexist.

It’s a very real and very human response to loving someone whose time feels uncertain

02/07/2026

There’s something people don’t understand about Friedreich’s Ataxia.

It doesn’t just change a body.
It changes time.

Time moves differently in our house.
We celebrate small things louder.
We notice changes quicker.
We don’t postpone “someday.”

When Jesse was diagnosed, I thought strength meant fighting.
Pushing.
Fixing.
Beating it.

But over the years, I’ve learned something else.

Strength is staying soft in a hard reality.
Strength is choosing joy on purpose.
Strength is letting your child lead with courage even when your heart is shaking.

FA has taken his balance.
It has tested his muscles.
It challenges his heart.

But it has never touched his spirit.

He still jokes.
He still cares more about everyone else than himself.
He still lights up a room without even trying.

And here’s what inspires me most —

He doesn’t measure his life by what he’s lost.
He measures it by who he’s with.

That perspective is rare.
That perspective is powerful.

To the families walking this road…
I know how heavy it can feel.
I know the fear that creeps in at night.
I know the way your heart braces for the next progression.

But I also know this:

Our kids are not tragedies.
They are teachers.

They teach patience.
They teach perspective.
They teach us what actually matters.

Jesse is not defined by a diagnosis.
He is defined by how he loves, how he laughs, and how he refuses to let this disease steal his light.

And as long as he’s here —
we are living fully.
We are loving loudly.
We are choosing hope daily.

That’s what this page is about.
Not just awareness.

But life. 💛




Happy Birthday, Jesse. 🎉Today we celebrate you — your laugh, your strength, your sarcasm, your kindness, your stubborn d...
02/01/2026

Happy Birthday, Jesse. 🎉
Today we celebrate you — your laugh, your strength, your sarcasm, your kindness, your stubborn determination, and the way you light up every room just by being in it.

You have taught me more about courage than anyone I know. Not the loud, look-at-me kind… but the quiet kind. The kind that shows up every day even when it’s hard. The kind that smiles through pain, cracks jokes when life isn’t fair, and keeps loving people deeply no matter what.

You don’t let life define you — you define how life is lived. And the way you live it matters. You matter. Your impact reaches farther than you’ll ever truly see.

I am so proud to be your mom. Proud of the man you are. Proud of your heart. Proud of your fight. And proud of the joy you bring to everyone lucky enough to know you.

Today we celebrate another year of memories, laughter, love, and you.
Happy Birthday, my sweet boy. I love you more than words could ever say. 💙

01/30/2026

To the FA parents who feel like their hearts live in pieces now—

I don’t just understand you.
I am you.

I know what it feels like when the diagnosis doesn’t just land in your ears, it crashes into your chest and stays there. When life splits into before FA and after FA, and nothing ever feels the same again.

I know the quiet grief no one sees.
The grief for milestones that may never come.
The grief that hits you out of nowhere—watching your child sleep, or laugh, or struggle with something that should be easy.

I know the terror of noticing the changes.
The way your heart drops when you see something slip away that was there yesterday.
The way you smile and encourage while screaming inside, please not this too.

I know the exhaustion that lives in your bones.
The kind that sleep doesn’t fix.
The kind that comes from loving someone so deeply while knowing you can’t protect them from everything.

And yet… we love anyway.
With a ferocity that would move mountains if it could.
With a devotion that shows up even when we are shattered.

Some days I am strong.
Some days I break in the bathroom or the car or the middle of the night.
Some days I feel like I am grieving someone who is still right in front of me—and that is a pain I wouldn’t wish on anyone.

But here is the truth I hold onto with everything I have:

Our children are still here.
Their lives still matter.
Their joy still counts.
Their presence still changes the world in ways no disease ever could.

FA has taken things from us.
But it has not taken our love.
It has not taken our bond.
It has not taken the way our children teach us what courage really looks like.

If you are drowning today, please hear me—
You are not weak for hurting this much.
You are not broken for being afraid.
You are a parent loving their child through the unthinkable.

From my heart to yours…
I see your pain.
I carry it too.
And even in this heartbreak, we keep going—together. 💙

01/30/2026

A diagnosis is information.
It is not an identity.

It may explain symptoms, timelines, and uncertainties—but it does not explain who someone is, what they’re worth, or how deeply they matter.

A diagnosis doesn’t define their humor.
It doesn’t define their kindness.
It doesn’t define the love they give, the joy they bring, or the impact they leave behind.

People are so much more than a name on a chart or a word spoken in a doctor’s office. They are memories, laughter, relationships, dreams, and moments that change others forever.

Yes, a diagnosis can shape the journey.
It can make the road harder.
It can force strength before someone feels ready.

But it does not erase humanity.
It does not steal purpose.
And it does not get the final word.

Because even in the face of illness, people continue to live meaningful, beautiful offers of love to the world.

A diagnosis may be part of the story—
but it is never the whole story.

01/20/2026

In a press release last week, Solid Biosciences announced that U.S. Food and Drug Administration (FDA) has granted Orphan Drug designation for SGT-212 dual-route gene therapy for the treatment of Friedreich’s ataxia. The FDA grants Orphan Drug designation to investigational therapies intended for the treatment, diagnosis or prevention of rare diseases or conditions affecting fewer than 200,000 people in the United States.

Click here to read the full press release: https://ow.ly/PeoG50XZM3m

I was asked to tell my story on caregiving here it is,I didn’t choose to become a caregiver. It happened the day love as...
01/17/2026

I was asked to tell my story on caregiving here it is,

I didn’t choose to become a caregiver. It happened the day love asked more of me than I ever imagined I could give.

My life slowly rearranged itself around someone else’s needs. Appointments replaced plans. Medications replaced sleep. Fear became a constant companion, sitting quietly beside hope. I learned medical words I never wanted to know and strength I never knew I had.

Caregiving is exhausting in ways people don’t see. There is no break, no off switch. I am tired before the day even begins, yet I get up anyway. I carry worry in my chest and still find a way to smile. I grieve what life used to be while fighting for what still is.

Some days I am strong. Some days I am not. Some days I feel brave, and other days I feel completely broken. I’ve learned that love can exist alongside anger, exhaustion, and heartbreak—and that none of those feelings mean I love any less.

I watch someone I love struggle, knowing I can’t fix it. That is the hardest part. I would give anything to take the pain away, to trade places, to make it fair. But instead, I show up. Every day. Even when I’m scared. Even when I’m empty.

Being a caregiver has changed me. It has stripped me down and rebuilt me with patience, resilience, and a deeper understanding of what love really means. It’s not grand gestures—it’s staying. It’s holding on. It’s choosing them, again and again, no matter how hard it gets.

This is my story.
I am tired. I am human. I am still standing.
And I love with everything I have.

This is Jesse’s family aunts uncles cousins brothers sisters it’s a lot we are blessed ❤️
01/15/2026

This is Jesse’s family aunts uncles cousins brothers sisters it’s a lot we are blessed ❤️

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Our Story

Friedreich's ataxia is a life shortening condition that causes progressive damage to the nervous system resulting in symptoms ranging from muscle weakness and speech problems to heart disease. Degeneration of nerve tissue in the spinal cord and of nerves that control muscle movement in the arms and legs. Most people with Friedreich's ataxia also develop scoliosis and are confined to a wheelchair. There is no cure for this life changing life shortening disease.