At just fours year old, little Ezra Thorman can tell you how many moons Uranus has and recite the whole of Julia Donaldson’s Room on a Broom.

Fascinated by the solar system, the bright youngster from Ramsgate is described by mum Portia as an encyclopaedia who can recite a “ridiculous” number of facts.

It’s something she and husband Dan had not dared to imagine when he was a baby, when they were told he would not live past two.

Diagnosed with genetic condition spinal muscular atrophy (SMA) type 1, they were informed he would have problems moving, talking and breathing, and would be unlikely to survive for long.

But Portia says thanks to medical science, in the form of ground-breaking drug Nusinersen, Ezra is defying the odds and the family has been blessed with time.

Driving around in his power chair, attending nursery and thriving, Ezra is now getting excited about the next big step - starting Newington Community Primary School in September.

Behind the scenes, life can admittedly be hard - he has a nurse stay awake by his bedside every night due to the risk of his lungs collapsing, he can’t walk and he is PEG-fed through the stomach.

In the first two years of his life, he almost died 10 times - basically every time he got a cold. But Portia says she remains positive and she and Dan and their three other children, Maisie, 20, Erin, 17 and Martha, seven, enjoy every moment with him.

The primary school teacher, who had to give up work to care for Ezra, also refuses to wrap him in cotton wool, instead letting him live the life that at one point they didn’t think he would have.

“He goes to nursery, he loves it, it wouldn’t be right to not let him do what others do,” she said.

“It’s been a process. We’re at a place where he shouldn’t be here if not for medical science and so I stay positive.

“He’s such an amazing boy. I’m so proud of him.”

SMA type 1 is the most severe form of the disease caused by a breakdown of the nerve cells in the brain and spinal cord.

This means the brain stops sending messages that control muscle movement, severely limiting movement and causing breathing and swallowing difficulties.

Ezra, however, has become an accomplished driver, getting around in his Wizzybug with a joystick, allowing him some independence, but he is about to outgrow this chair.

Thanks to a fundraiser set up by his parents - raising an astonishing £5,500 in just weeks - he is now awaiting a new set of wheels called Tiny Trax, which will allow him to drive over all terrains.

It means he will be able to take part in forest school and other outdoor activities when he starts school.

“He’s so excited about it,” said Portia.

“You can get chairs on the NHS but this one is by the same designer as the Wizzybug.

“The Tiny Trax top speed is two-and-a-half times faster so he will be able to keep up with his sister on her scooter and have more of a chance in playground races at school.”

Ezra was just five weeks old when he first became ill.

“He’d been fine before that,” said Portia.

“But he got a cold and ended up in intensive care in London. He was intubated and put on life support.

“He finally got better and it was just put down to being a cold.”

But Portia says she knew something wasn’t right.

“I noticed he wasn’t able to hold his head up or move his legs or grasp, but I was told it was just because he had been so poorly.

“Three different health visitors saw him and he passed his nine-week check at the GP, which is ridiculous really.”

Finally, desperate for answers, the mum broke down in tears at the Newington clinic and her concerns were looked into.

Admitted to the Rainbow Ward at the QEQM hospital, they carried out tests including looking at his tongue, which with children with SMA type 1 wobbles all the time.

Asked to go to the Evelina in London, they were given the devastating diagnosis.

“It was awful,” Portia said.

“It happened the same weekend as my husband’s brother got knocked off his bike in Whitstable and killed.

“So he lost his brother and was then told his child would die.”

After his heartbreaking diagnosis, the family was give a ray of hope in the form of a drug, which had just been trialled in America, which could prolong the life of children with SMA type 1.

The jab, which is given to Ezra every four months, increases the production of a motor neurone protein which he doesn’t have and goes directly into his spinal fluid.

It was initially accessible through an access programme in England via a drugs company, but is now funded by the NHS.

Ezra is one of the first children to have it.

“He wouldn’t be here if he didn’t have it,” said Portia.

“We still don’t know what the prognosis is, but he is one of the oldest to be alive with SMA type 1.

“We enjoy every moment with him, we don’t stop him living his life - he brings us so much joy.”

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