Hello everyone,

We’d like to share a little about our incredible son, Frankie a boy whose strength and joy have touched our lives in ways we never could have imagined.

When Frankie was just two weeks old, he didn’t pass his hearing test. At first, we thought it was a minor hurdle, something that could be addressed with time. But as the months went on, we started to notice things every parent fears. Frankie wasn’t meeting the milestones that come so naturally to other babies, he couldn’t hold his head up, roll over, crawl, or sit unaided. Then, just before his first birthday, we received a diagnosis that turned our world upside down. Frankie has a rare and life-limiting condition called mitochondrial disease, SUCLA2 type, a type so uncommon it affects only one in four million people.

Life with this condition means that even the simplest physical tasks are an uphill battle for Frankie. But if there’s one thing we’ve learned, it’s that nothing can dim his light. Frankie has a contagious smile that fills every space with joy. He’s clever, funny, and full of personality, with a sense of humour that keeps us laughing. While he is non-verbal, Frankie communicates beautifully with his eyes, his expressions, and his laughter. He’s taught us that his diagnosis doesn’t define him, his spirit, resilience, and love for life do.

Over the past few years, Frankie has faced numerous challenges, including his hips starting to dislocate. Despite countless hours of physiotherapy and the use of standing frames, the condition has progressed. Because Frankie is non-mobile, it’s absolutely essential for him to spend time weight-bearing, not just to support his muscles, but to maintain his overall health, particularly his respiratory function.

Frankie’s Amazing Achievement

Recently, Frankie achieved something that left us in awe. He walked 4.6 km with the help this remarkable piece of equipment called the Innowalk. For a boy who spends most of his time in a wheelchair, this was nothing short of a miracle. Being able to stand and move has done wonders for Frankie’s health and has given him something we often take for granted the chance to be at eye level with his siblings and peers. Watching him engage, laugh, and interact in this way is a gift beyond measure.

For individuals with disabilities who are non-ambulatory, being sedentary for long periods can have serious health impacts. That’s where the Innowalk comes in. This incredible piece of equipment enables people with severe disabilities to engage in light physical activity, offering life-changing benefits. Research shows that movement in the Innowalk improves overall health by aiding respiration, circulation, gastrointestinal function, muscle and joint mobility, bone density, and even mental well-being.

Frankie has been fortunate to use the Innowalk occasionally over the past six year through pop up sessions, and the benefits we’ve seen have been extraordinary. From better head control to improved digestion and fewer respiratory complications, the difference this device makes is clear. Now, we’re working to bring an Innowalk home so Frankie can use it consistently and unlock even more of its life-changing potential.

Unfortunately, this equipment is expensive, and that’s why we’re reaching out to our community for help. With your generosity, we can make this a reality for Frankie, giving him the tools he needs to stay strong, healthy, and happy.

Every donation, no matter the amount, will bring us closer to our goal and help Frankie thrive in ways we know are possible.

From the bottom of our hearts, thank you for your kindness and support.