Myotonic Dystrophy Awareness

Kia ora koutou,

I'm raising funds for the Muscular Dystrophy Association of New Zealand, an organisation that has become so important to our family.

Our son Brayden was diagnosed with Myotonic Dystrophy, a progressive, genetic muscle condition. It affects not just his muscles, but his heart, breathing, energy, and everyday life. It is a condition he will live with for the rest of his life, and one with no cure. Three years after his diagnosis our daughter was diagnosed, although she isn’t as bad, she still suffers with digestion, sleep and will have to undergo IVF when starting a family.

As a mum, it is heartbreaking to watch your children face challenges that most people never see. Simple things can take so much more effort, and there are many hospital visits, specialist appointments, and unknowns ahead.

The Muscular Dystrophy Association NZ does incredible work. They provide fieldworkers, support, information, and advocacy for families like ours across Aotearoa. They make sure we are not alone on this journey.

All funds raised through this page will go directly to the Muscular Dystrophy Association NZ, to help them continue their vital work for my children and for the hundreds of other Kiwi families living with muscular dystrophy.

If you can donate, share, or just send aroha, we are so grateful. Thank you for supporting our whanau and for helping to raise awareness for Myotonic Dystrophy.

With love and thanks,

Simone