Ask Max

In this month’s Ask Max, Maxine reflects on the importance of saying no. Between hospital visits, school meetings, and family life, it’s easy to forget self-care. But sometimes, pausing and rescheduling is the healthiest choice—for you and your child. Saying no isn’t failure; it’s protecting your energy for what matters most.

When Austin began using a wheelchair, I feared it meant giving up. But what I saw instead was relief and freedom. No more struggles to keep up with friends, no more fear of falling. The chair gave him independence, safety, and dignity. For families facing the same stage, please know you’re not alone. A wheelchair isn’t the end—it’s a tool for inclusion and a better quality of life. Sometimes, embracing the next step opens doors we never expected.

Caring for Austin, who has Duchenne, can be overwhelming. Max shares her experience with burnout and offers practical tips—from short breaks to celebrating small wins—to help carers cope and find balance.

This month in Ask Max, Maxine shares her family's honest experience of taking part in a Duchenne clinical trial for over eight years. From early starts and invasive procedures to the strength of community and the hope that fuels every visit—this is a powerful insight into what trials truly mean for families.

School transitions can be exciting—and overwhelming—especially for families navigating Duchenne. This month in Ask Max, our Family Support Advisor shares her personal experience, tips for a smoother transition, and a gentle reminder that you’re not alone. From EHCP updates to emotional prep, Maxine covers the challenges and the hope this season brings.