Our story:
In 2016, we heard the words no parent ever wants to hear: ‘Your son has Duchenne Muscular Dystrophy.’ Duchenne is a cruel, terminal disease that takes away a child’s ability to walk, to move, and eventually to breathe. Natalie did what any mother would do. She became relentless in her search for ways to slow the disease and fight for her son’s future. In 2019, the family was dealt another devastating blow, the sudden loss of Ravion’s father, leaving Natalie to carry everything alone. At just 9 years old, only four years after his diagnosis, Duchenne stole Ravion’s ability to walk and began weakening his arms and upper body. Since then, every day has been a battle.
The reality of caregiving:
Ravion lives with constant discomfort, and for over five years Natalie has survived on only broken hours of sleep, waking repeatedly to reposition his 75-pound body so he can breathe and rest. By day, she must summon the strength to provide therapy, stretching, a strict diet, and exercise six days a week. After years of sleepless nights, the toll on her health is profound. Insurance refuses to cover 24-hour care because Ravion’s condition doesn’t meet their criteria forcing Natalie to provide the critical support the system denies. By the summer of 2024, the income from Natalie’s small businesses dropped significantly, making it nearly impossible to keep up with medical costs, caregiving support, and daily living expenses related to full-time caregiving.
Meet Ravion:
What makes Ravion shine is music. He listens, he sings, and for those moments, he forgets the weight of Duchenne and simply lives in joy. Even when the nights are hard, he reminds us that our time together is a gift. His laughter and determination bring strength, hope, and love into our lives.
A fighting chance:
Yet Ravion still has a fighting chance with Temperana Reflex Therapy, which Natalie has faithfully used since 2021. Alongside this, he requires a constant regimen that demands both time and strength. This fundraiser exists to fill that gap, to bring relief, and to provide the support that the system denies.
Beyond survival:
Beyond her own battles, Natalie has always given to others, from raising funds for hurricane survivors to advocating for families facing impossible challenges. Her dream is to one day create a safe and healing space where children like Ravion can thrive and families can find strength together. But right now, the fight is for today: to give Ravion the comfort, care, and dignity he deserves.
Every dollar raised goes directly to Ravion’s care, therapies, and daily needs. Natalie, his mother, is the designated recipient of this fundraiser, ensuring that all funds are used to support Ravion’s well-being.
How you can help:
Your support helps Ravion keep shining through music, laughter, and love and gives Natalie the strength to keep fighting. Please consider giving today. Every donation, no matter the size, eases her burden and helps give Ravion the dignity, comfort, and joy every child deserves.