Max’s journey

For the first time in years Max is getting a taste of independence, at the age of 19. He can walk, with the aid of a walker to a door, open it and decide for himself if he wants to go in.

If there are people in the room, Max is likely to want to join in as he loves company and is a very curious and lively young man. He is loving his time at National Star as a residential student.

In 2019, Max was diagnosed with Phelan-McDermid syndrome (PMS), a rare genetic disorder that affects how a person’s brain develops and functions, and how the body functions. He has a severe learning disability and many health issues and requires specialist teaching and therapies. Max also has complex uncontrolled epilepsy. He has scores of seizures every day.

Before arriving at college Max had received very little therapeutic support. With the help of National Star’s physiotherapy team, Max has learned to use a Grillo Gait Trainer, a piece of equipment which helps his posture and provides him with the stability he needs to walk. While he still requires staff to be with him, he can move independently. This has been life changing.

The physiotherapy team is now working with their speech and language colleagues to see if they can develop a form of communication so that Max can articulate his own choices on where he wants to go. Max also accesses music therapy with the emotional wellbeing services team and is supported by occupational therapy.

Max had always lived at home so the move to National Star was a huge change, not just for him but for his mum, whom he is very close to. Max is non-verbal but he is very expressive, and the National Star team have learned how to communicate with him and meet his complex care needs.

“Max is so lucky to be able to have the input of physiotherapy, occupational therapy and speech and language therapy and to be looked after by such a caring and dedicated team,” says his mum Kirsten.