HUNTER’S STORY
HUNTER’S STORY
THE BEGINNING
Hunter was born on April 13, 2017, by emergency C-section, weighing just 4 lbs. 2 oz. After five anxious days in the neonatal unit, we finally brought him home—overjoyed and relieved. Little did we know that this would be just the beginning of a much larger battle.
MISSING MILESTONES
As Hunter grew, we noticed he wasn’t meeting his developmental milestones. He was slow to turn over, sit up, and crawl. Specialists told us, “He’ll catch up,” but as his delays became more severe, we grew desperate for answers. Physical and occupational therapy brought some progress, but by the time he was a year old, he still wasn’t standing or walking.
When we insisted on genetic testing, the results came back negative, leaving us relieved but confused. As Hunter’s second birthday passed with no improvement, it became painfully clear—waiting wasn’t the answer.
THE DIAGNOSIS
On May 19, 2020, just after Hunter’s third birthday, we received the call that shattered our world. Hunter was diagnosed with Charcot-Marie-Tooth Disease Type 4B3 (CMT4B3), a rare and devastating neurodegenerative disorder. With only 14 known cases worldwide, we were warned about the grim reality. The experts told us there were no treatments, no cures. Hunter would likely lose the ability to walk, use his arms, and may even go blind. We were told to brace ourselves for the worst and to return in a year. We were devastated, terrified, and utterly heartbroken.
OUR HERO
Now 7 years old, Hunter remains our hero. He has bravely endured surgeries, countless tests, and numerous doctor visits, yet his laughter and bright smile shine through. He can’t jump, ride a bike, or run like his friends, but that doesn’t stop him. He stumbles and falls but always picks himself up and moves forward.
OUR HOPE
Hunter’s spirit inspires us to keep fighting. We refuse to give up on him—and with your support, we believe a cure is within reach, not just for Hunter, but for all children battling CMT4B3.
Hunter’s courage has transformed our sorrow into an unwavering determination to find a cure. Hunters CMT4B3 Research Foundation is committed to giving a voice and hope to children suffering from rare diseases. By funding laboratories worldwide that are leading the way in scientific breakthroughs, we aim to advance research and bring about change. Time is our enemy, as the progressive damage to Hunter’s nervous system cannot be reversed. Yet, each day, we rise with renewed determination to find a cure for Hunter and all children battling rare diseases.
WE NEED YOUR HELP NOW
Please join us in our mission to preserve Hunter’s quality of life and create a brighter future for our little hero, along with thousands of children battling peripheral nerve disorders and rare diseases. Every contribution counts, and we want you to know that our founders cover all organizational overhead, ensuring that 100% of your donations directly support vital research grants. Together, we can make a difference!
Hunter and his parents - Iris & Brett