Jesse's cure for Friedreich's Ataxia

08/19/2025

Some people come into our lives for a very special reason and Conner Jones you are one of them❤️ thank you for being Jesse’s right hand man we love you 🥰

08/19/2025

"Strength isn't about physical power, it's about the courage to keep going when everything inside you is screaming to stop. It's the resilience to face your fears, the determination to chase your dreams, and the will to rise above adversity. You are stronger than you think, braver than you feel, and capable of more than you imagine.”

07/22/2025

All the kids love Uncle Jesse 🥰🥰🥰❤️❤️❤️

06/05/2025

"Strength is not about the absence of weakness, but the courage to keep going despite it."

05/03/2025

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05/03/2025

In the beginning

04/21/2025

I was asked what advice I would give someone who was just diagnosed with FA and what my journey has been like.
The day my son was diagnosed my life changed in a way I never could have imagined. I was devastated, pi**ed, confused, and absolutely terrified. I had never heard of Friedreich’s ataxia and I became consumed in it researching all I could, trying every vitamin that might help him just looking for something to stop it. I was exhausted and I was so heart broken and finally realized I was living for this damn disease it was controlling our life and so we started to live with it not for it. I had to accept the fact that my son was going to suffer through this life and there’s not a damn thing i can do to stop it. I struggle everyday with that I hate it and it breaks my heart everyday to see him going through this. If your new to this I am so so sorry and I wished I could say it will all be fine but it won’t be but the sooner you accept it the sooner you will be able to say I am ok I got this and you can then change your focus to giving your child the best life you can. There are support groups use them and become knowledgeable of FA ( not consumed ) and want others to become knowledgeable. I had the MDA clinic do a school assembly about my son so the kids could understand him instead of make fun of him.
( kids are mean and judge mental ) and that was one of the best things I could have done. Work with your team of doctors ask questions and ask for help. Take it one day at a time and know that there are others fighting the same fight!
Jesse’s cure for FA “NO ONE FIGHTS ALONE”

04/15/2025

Friedreich’s ataxia is a rare genetic disorder that slowly attacks the nervous system and the heart. It usually appears in childhood or early teens, often making simple daily tasks harder as people lose muscle control and balance. The cause is a faulty gene passed from both parents, leading to low levels of frataxin—a protein your body needs to keep cells healthy, especially in the brain, spinal cord, and heart.

When frataxin drops, nerves can’t carry signals like they should, and the heart muscle becomes strained. This leads to problems with walking, speaking, and even heart function, often robbing people of their independence much too soon. The condition is progressive, meaning it keeps getting worse over time, with many needing a wheelchair by adulthood.

Friedreich’s ataxia affects every part of life—not just physically, but also emotionally and socially. It's difficult for families too, as there’s no cure

02/01/2024

Happy birthday to my big 24 year old I love you so much Jess you are a true blessing keep fighting your fight and here is to another year! 🥰 Jesse’s Jesse's cure for Friedreich's Ataxia

10/21/2023

As if the kid doesn’t have enough s**t to deal with 😢 broken collar bone

09/13/2023

So exciting news Jesse just took his first dose of the one and only treatment for FA!! It is not a cure but it should slow down or stop his progression so praying that it all goes well and there are no or very minimal side effects. He is still all smiles and doing awesome🥰

03/17/2023