As two surfers, we had always dreamed of raising a little surfer girl. We imagined family surf sessions from the moment she could stand on a board, epic adventures in search of waves, and maybe one day, seeing her become a surf coach in our business.
Grace enjoying a walk in her beach buggy!
But life had other plans. When our daughter was born, our world changed in an instant. She was diagnosed with a rare condition called Muscle Eye Brain disease, a disorder that affects all three organs its name implies. The diagnosis meant that she would face significant physical and cognitive challenges, be wheelchair-bound, and remain dependent on us for her entire life.
The dreams we had for her—and for our family—were shattered. Overnight, we had to adjust to a reality we’d never prepared for, filled with uncertainties, heartbreak, and the need to rewrite our story.
It was during this time that we began to understand the importance of having a strong support system. The challenges we faced as a family were overwhelming, but the love and guidance of dedicated therapists, teachers, and caregivers carried us through. Their compassion, patience, and expertise helped us navigate a world we never thought we’d enter, and in turn, they helped transform our lives.
These experiences gave us a profound appreciation for organisations like Sinethemba Special Care Centre, which offers love, care, and dignity to children with severe special needs and their families. They provide not just physical care but a space of hope, joy, and belonging—a lifeline for families facing immense challenges.
This journey of grace has taught us more than we ever could have imagined. While our dreams of raising a surfer girl have changed, they’ve been replaced by something far deeper: a passion for supporting others in similar circumstances and helping children with special needs experience the beauty, joy, and healing power of the ocean.
Read here on how you can help Sinethemba.
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Please note: Ride-sharing is for surf lessons only. Private transfers are included with surf guiding, day trips and multi-day trips.
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