Family's plea for life-saving treatment of rare condition

But for Justin Neale, 37, and his partner Samantha Williams, 36, from Swffryd, near Abertillery this wasn't the case when baby Lucian Neale was born last year. 

Lucian, described by his besotted parents as their "little warrior", was diagnosed with type one spinal muscular atrophy (SMA) at just eight weeks old. 

What is SMA?

SMA is a very rare genetic condition.

It causes progressive muscle wasting and weakness and can affect movement such as crawling and walking ability, with a life expectancy of just two years. 

Lucian was diagnosed with SMA type one at just eight weeks old (Image: Justin Neale) Despite going to hospital multiple times during pregnancy, Samantha was told there was nothing to worry about, and was even told she was being "overprotective". 

He was soon diagnosed with low muscle tone after he movements weren't developing, and were told these issues should be raised in his six week check. 

Justin and Samantha have referred to Lucian as their 'little warrior' (Image: Justin Neale) Samantha said: "I was up all night crying and had been googling his symptoms. All the results looked terrifying but all led back to one thing SMA. 

"I was in such a state that my mum finally said we should take him to A&E. When a doctor came in, I finally felt like someone was listening to me."

Lucian was admitted to the Grange University Hospital in Cwmbran, and eventually transferred to Noah's Ark Children's Hospital for Wales in Cardiff, before being transferred to a hospital in Bristol for treatment after being officially diagnosed with SMA type one. 

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Samantha said: "This was any parent's worst nightmare. We were told to prepare for palliative care because Lucian wouldn't have any quality of life."

They were given the options of drugs or a spinal infusion, and decided on the drug as they felt "the sooner the better" for treatment. 

Lucian is now undergoing private physio to help with his movements (Image: Justin Neale)

After a few days on medication, Lucian's movement began to improve, and the family were trained on the equipment required while being isolated to avoid infection. 

Dad Justin says it is a "constant battle" but his son is proving "everyone wrong". 

Justin says his son has proved everyone wrong despite the constant battle (Image: Justin Neale)Samantha added: "No treatment will undo the damage to his motor neurons and now what we need to do is make every effort to get him as strong as we can to ensure that he has the happiest and most independent life he can."

Treatment could cost thousands in the UK, so the family are looking to go abroad where it is cheaper, and they have currently raised £8,500. 

If you would like to donate, you can do so here.