Levi Guido, 12, is usually housebound due to a rare genetic condition known as Pelizaeus Merzbacher Syndrome but was able to venture out to Thirroul Beach with his parents and two sisters with the help of Patient Transport NSW.

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"It was back in 2015 the last time we were all able to just go out and be free, I guess, and be able to do something all together," his mum Jayde Jordan said.

"We can just never do anything as a family.

"It was a good feeling. We're not able to do that, it's not a regular thing, so it was great to be able to let the girls run around."

Levi has a terminal disease affecting his central nervous system. He will never be able to walk, he can't talk and has breathing problems which will worsen over time.

Ms Jordan found out about her son's diagnosis while pregnant, but she and partner Jayson Guido have never regretted their decisions. However life with a very ill child is tough.

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She said the global pandemic hasn't impacted their lives in a negative way, but how society has been living was "a taste" of what they have been doing every day for years.

"We're so scared of everything with Levi ... I feel as though now everyone feels how we feel every day," she said.

"This is our everyday life where we have to glove up and give him medications and always sanitise our hands.

"People are getting a taste of what we go through every single day so he doesn't catch anything."

The full-time carer doesn't know what the next year will hold, or whether her family will be able to venture out together again, but if she can help raise awareness for her son's disease then that is good enough.

"Even when Levi passes on my main goal is for everyone to know his name and what he went through and what this disease does," Ms Jordan said.

"I wont know where Levi's disease will take us but it will always be a privilege to be his mum no matter what happens."