Myotonic Dystrophy support and awareness NZ

In 2019 our family’s lives changed forever. Our 19 year old son collapsed and had a seizure playing handball. In the emergency room I watched his heart race to 175 bpm, and then slow down to 30 bpm within seconds. The drs were baffled, and a series of tests were done, he was eventually diagnosed with Myotonic Dystrophy (DM1) a muscle weakness disease. He then underwent heart surgery in Christchurch.

When I researched about the condition, and it’s symptoms, everything fell into place. He couldn’t sleep, when he did he couldn’t wake up. He was always in pain, he’s muscles would go into seizures and clamp up. His eyelids had started to droop, his speech was slurry. All common symptoms of DM1. These symptoms are a few of many. It effects a body top to toe, inside and out! There is no cure and it’s progressive.

The whole family had to be tested, and this is when we found out our daughter Myah also has it 😞

As a mother I feel deeply pained and wish I could swap places with them both! They have both had to take a different life path to what they had dreamed of.

Myah and Brayden are warriors, and the reason I keep putting one foot in front of the other.

Who knows what their future will bring, but for now we take one day at a time.

Thank you for taking the time to read. Even if you are unable to donate just making people aware of this commonly mis diagnosed condition is a step forward

Simone x