Ezra Rae has been diagnosed with Duchenne Muscular Dystrophy (DMD), which see sufferers lose the use of their limbs.
A mum has told of the emotional rollercoaster her family have gone through after her son was diagnosed with a rare terminal illness.
"We went to the GP to review it. Our other son is very tall but Ezra's growth was slowing down. We were on a waiting list for paediatrician. "It was something called CK, which is an enzyme found in the muscle. I asked him point blank what he thought it was and he said that it was best to have a chat. As they get older people with DMD may become reliant on a ventilator due to its impact on the heart and respiratory system, with the disease sadly taking the life of every sufferer.
"As he gets older he may fall over a bit more and struggle to get up. He looks at his older brother who is very active but he won't be able to do that. It's going to be very hard for us to watch it happen over time. "It is really difficult to ascertain how quickly this may happen to Ezra. It could also impact his respiratory and heart muscle which could mean that Ezra needs a ventilator at night and as things get worse he may require it during the day also.
"He is quite cheeky. I am excited for his future despite the tough start. With our support we are going to make sure he has a good life."
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