“Hey Friends!”
If you’ve spent any time watching Jackson’s videos online, you’re probably already familiar with his signature greeting. He announces it to the camera with an effortless confidence and a vocabulary that makes it easy to forget he’s only two and a half years old. Jackson is the kind of kid who commands a room, whether he’s introducing a new cooking video, talking about his hero Spiderman, or charting his next path across the floor.
Jackson first shot to internet fame at 21 months old through a viral video of him begging his mom to take him to Waffle House. At the time, Waffle House was one of the few foods Jackson was completely obsessed with eating by mouth—a major milestone, since he receives most of his nutrition through a G-tube.
Since then, Jackson has become a true ambassador for the rare neuromuscular disease Nemaline Myopathy. Hundreds of thousands of people from all over the world tune in daily to watch his videos and follow his adventures with his mom (2025 AFBS Strength in Action honoree) Kaitlyn, his dad John, and his baby brother Will, cheering on every single achievement along the way.
The Journey to Diagnosis
When Jackson was born, he spent his first couple of weeks on breathing support in the hospital while doctors worked to understand his low muscle tone. After a few weeks of uncertainty, a muscle biopsy at six weeks old gave his family a definitive answer: ACTA1-related Nemaline Myopathy.
Nemaline Myopathy is a rare congenital muscle disorder that causes physical weakness, making milestones like sitting up, crawling, walking, breathing and eating a significant challenge. While it affects the skeletal muscles, it doesn’t impact a cognition, intellect, or vibrant personality one bit—and Jackson is living proof of that.
Ever since receiving his life-changing diagnosis, Jackson and his family have faced every hurdle with incredible resolve. Most recently, that meant navigating a major hip surgery that required Jackson to spend weeks healing inside a heavy body cast. For an active toddler, being restricted by a cast was no easy feat, but now that he’s out of it, his mobility is improving in leaps and bounds.
In fact, Kaitlyn says he’s currently in a state of “Non-Stop GO GO GO”. Instead of slowly working his way through a gait trainer like his care team originally expected after surgery, Jackson completely bypassed it. Over the past few months, he’s learned to crawl, sit up completely on his own, scoot wherever he wants, and cruise around in his walker all by himself. He’s also absolutely obsessed with riding his tricycle!
Taking His Lead
A big part of this sudden physical explosion has been a shift in perspective. Instead of forcing rigid therapy routines, Kaitlyn and his team are letting Jackson call the shots. “We’ve been taking HIS lead and he’s been CRUSHING it,” Kaitlyn shares.
He absolutely adores his physical therapist, and they’ve become the perfect team, unlocking new physical milestones almost every single day. It’s incredibly fun to watch him chase down his own independence.
That independence has also made him an excellent accomplice to his baby brother’s morning routine. Now that he can zip around in his walker, one of his favorite activities is wheeling himself right into Will’s room to help open the door when the baby wakes up.
Jackson’s journey is a beautiful reminder of what’s possible when a child’s determination is backed by a supportive global community. It’s why this Nemaline Myopathy Awareness Month, he’s one of our featured fundraisers for the Second Annual NM Awareness Share-A-Thon, running from May 18th to Nemaline Myopathy Awareness Day on May 31st.
Make a Difference… One Share at a Time!
Helping is incredibly quick and easy to participate at any level you feel comfortable with, whether you’re fundraising, donating, or sharing:
- Support a Fundraiser: Make a direct donation to Jackson’s fundraising page to help fuel the specialized medical research into finding effective treatments for Nemaline Myopathy.
- Start Your Own Page: Create your own personal fundraising page to share with friends and family to spread the word!
- Share, Share, Share: Follow A Foundation Building Strength on Facebook and Instagram. We’ll be posting awareness content all through the Share-A-Thon—just hit the share button to help us raise global awareness.
- Unlock the $25,000 Match: When our community reaches our collective goal of 500 total social media shares by May 31st, it triggers a massive $25,000 matching gift that will DOUBLE the impact of our research funding!
Let’s match Jackson’s unstoppable energy. Head over to his page, share his story, and help us build strength today.
Together, we’re building strength.
A Foundation Building Strength (AFBS) is a nonprofit organization dedicated to accelerating the development of treatments for Nemaline Myopathy. Our mission is to fund cutting-edge research to find effective treatments while providing resources and a strong community for families affected by NM. We are proud to be at the forefront of driving Nemaline Myopathy research breakthroughs forward through collaborations with research teams across the globe.
Donate to AFBS: Your monetary gift will support critical research and provide vital resources for NM families.
Stay Connected: Sign up for our email list to receive the latest updates from AFBS and learn more about NM research. Are you an individual or a caregiver of an individual affected by NM? Fill out the AFBS Contact Survey to be connected with valuable resources, support, and research opportunities! Visit our “Get Involved” page for even more ways to connect!
Jackson’s journey has brought such awareness to a disease most of us had never heard of . Action Jackson as we laughingly call him on his mom’s Facebook page. While I am blessed not to have had a child with Nemaline Myopathy I am very familiar with the importance of daily physical therapy. My sister had a car accident at 15 many years ago and physical therapy routines were critical to her recovery which did span many years . It’s hard on the loved ones watching the patient have to go through the tough & grueling daily process but it’s a must do situation that cannot be skimped on or their progress is halted or slowed significantly . Jackson’s parents are such a bright light of the way parents when faced with a devastating situation regarding their child have the choice to embrace it and push forward to make every effort to helpful their child or abandon their child as sadly other have done . John and Kaitlyn are both such wonderful examples of the parents who fully embrace and support their differently abled child . And their creative persistence is a testament to the ability of a supportive family and village can make in a child’s life . Jackson’s daily greeting of “hey friends” never fails to bring a smile to many a face . This family are a testament to the importance of having a creative support group . My birthday next month I do hope to do Facebook fundraiser for Nemaline Myopathy .