The mother of a teenage boy with a rare genetic disorder has said Make-A-Wish gave him a home sensory room at 'the perfect time'.

Avril Walsh Evans' son, Matthew, has adenylosuccinate lyase deficiency.

Medical advancements mean the symptoms can be treated but there is no cure.

Matthew, who is 19 and finishing up school, is a wheelchair user and non-verbal.

Avril told Lunchtime Live that Matthew suffers frequent seizures.

"He has a seizure disorder and unfortunately it's so rare there's not very much known about it," she said.

"So even his prognosis is quite unknown".

Matthew in his wheelchair. Picture: Supplied

Avril said she sleeps with one eye open most nights.

"Matthew has a very severe seizure disorder... his seizures have presented in many ways over the years, and he has daily seizures," she said.

"Since six-months-old he's not really had many seizure-free days.

"We have a camera on him at night-time; normal seizure detection system don't really work for him.

"I just have to be half alert most of the time".

'Something really nice'

Since Matthew cannot communicate, Avril said the family had to make the wish for him.

"He had no way of communicating his wish," she said.

"They gave us lots of lovely ideas and we talked a lot with them about it".

Matthew rising a horse. Picture: Supplied

She said things were put on hold when Matthew had a "medical crisis" in the middle of the process.

"As he was recovering, we got back into it, and it was probably the perfect time to make his wish," she said.

"The wish we made for Matthew was for a kind of a soft play, sensory corner of his room.

"He has a lovely big bedroom and we said it would be lovely to make something really nice for him.

"He's leaving school now, he loves the sensory room in school, and we'd love to have something at home that's similar".

Matthew in his sensory room at home. Picture: Supplied

The room includes mirrors, a star projector and fibre-optic lights.

Avril added: "He can hold them, play with them, touch them - they're all safe.

"This is ideal for Matthew... it was a very, very positive experience from start to finish for us".

People can find out more information about Make-A-Wish or donate here

Main image: Matthew and his mother Avril. Picture: Supplied