Westin: Built Tough

About this campaign

Westin was diagnosed with SURF1 Leigh syndrome in August 2023—a rare and scary disease that has changed our lives forever. Hearing words like “regression,” “terminal,” and “no cure or treatment” is every parent’s worst nightmare.

But Westin is strong, resilient, and full of life. We love him endlessly. He is our inspiration, and the impact he has on those around him is beyond words. Because of him, we refuse to lose hope.

Westin faces each day with a strength that inspires us all. While Leigh syndrome brings immense challenges, it also fuels our determination to keep going, raise awareness, support research, and fight for a cure for him and others like him.

Right now, there is no cure but there currently is ongoing research bringing hope for his future. Every step forward matters. In the face of uncertainty, we choose hope. We fight for a cure. And we do it together!

Time is critical for children with Leigh syndrome. Westin, amongst other children that are fighting this cruel disease, have so many odds stacked against them. But now, with your help, our extraordinary fighters have a chance to survive – they have a chance to live.

If you are unable donate, please share this campaign with as many people as possible, on as many platforms as possible.

Thank you for helping us take this all the way home. In the face of uncertainty, we choose hope. We fight for a cure. And we do it together!