‘He shouldn’t be able to walk’: How Adam is defying the odds to live life to the fullest 

Western Sydney Local Health District (WSLHD) patient, Adam Cook, 25 years of age, battles two chronic conditions: Duchenne Muscular Dystrophy and Cystic Fibrosis. However, despite these challenges, Adam’s determination and unwavering spirit have made him an inspiration to everyone around him.

Duchenne Muscular Dystrophy, a condition that primarily affects males, gradually weakens Adam’s muscles over time. Most young men with Duchenne’s stop walking at about the age of 12 years old, but Adam refuses to let that define him. Alongside Duchenne’s, he also has Cystic Fibrosis, a disease that primarily impacts his lungs but affects multiple body systems. Despite these obstacles, Adam is determined to maintain his ability to walk and live life to the fullest.

“From a Cystic Fibrosis perspective, he’s very well maintained. He doesn’t follow the rules. He shouldn’t be walking. He should be in the wheelchair pretty much all the time at this stage,” Fiona Cook, Adam’s mother said.

Adam’s day begins with a series of medications that help manage his conditions and keep him healthy. After taking his medications, Adam engages in physiotherapy sessions, where he works with WSLHD’s skilled therapists to improve his mobility and strengthen his muscles. Through regular physiotherapy, he learns various exercises and techniques to maintain his walking ability.

Exercise plays a significant role in Adam’s life. He is committed to staying active and pushing his limits. Over the past year, he has undergone intensive training, incorporating treadmill distances, resistance exercises, and mobility practices such as rolling, bridging, and getting in and out of a car.

He’s doing incredibly well.

Adam ensures he follows a balanced diet that supports his overall well-being. In his free time, he indulges in gaming, allowing himself to unwind and escape into fantastical worlds.

Adam’s journey is a team effort that involves his mother, Fiona; father, Darren; brother, Jeremy; the healthcare professionals at WSLHD; and an extensive network of support. The collaboration and communication between Adam’s Cystic Fibrosis and neurology specialists, along with community physiotherapists, psychologists, WSLHD consultant Dr. Jimmy Chien, dietitians, nurses, and community occupational therapists, is instrumental in his progress. They all work together, combining their expertise and support, to ensure Adam receives the comprehensive care he needs.

The team here, they’re just phenomenal. They’re always available when you need them. Even if it’s only a silly question, they’ll always be there to answer it.

“They were upfront with the fact that they weren’t going to have all the answers.I don’t expect anyone to have the answer. But if we can all work together to get a good outcome, maybe not the perfect outcome then that’s all we can ask for. That’s more than enough.”

The COVID-19 pandemic brought additional challenges for Adam’s care, but he did not let them deter him. Telehealth exercise classes and sessions became a crucial part of his routine. With the help of technology, he participated in virtual treadmill sessions and boxing to maintain his physical fitness. Stretching exercises helped him stay flexible and prevent muscle tightness.

Adam’s hard work and dedication pay off. Recently, he achieved his personal best on a six-minute walk test. He is the proof that in the face of adversity, with the right support and unwavering determination, it is possible to overcome obstacles and achieve remarkable feats.