'It took my breath away, it made sense': How a family realized their son, 4, has rare terminal condition after watching poignant video about girl, 5, with the same disorder

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Will Tharp Byers was diagnosed as autistic but his mom wasn't convinced
She saw a video of Eliza O'Neill who has terminal Sanfilippo Syndrome
Sufferers cannot break down sugar, over time many cells become defunct
Will's mom said she recognized the symptoms, a doctor said she was right

Published: 15:50 EST, 13 June 2015 | Updated: 07:43 EST, 14 June 2015

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A family realized their four-year-old son has a terminal disorder after seeing a video online about a girl suffering from the same rare condition.

Will Tharp Byers was diagnosed with autism after he seemed to be developing at a much slower rate than other boys his age.

But his mother Valerie was not convinced.

It was not until she saw a fundraising video called Saving Eliza, and read the story, that she recognized her son's symptoms: he has Sanfilippo Syndrome.

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Will Tharp Byers (left), four, found out he has Sanfilippo Syndrome after his mother saw a fundraiser video for Eliza O'Neill (right), five, who suffers from the same disease. The terminal condition currently has no cure

Eliza O'Neill was diagnosed with the metabolic disorder last year.

It means the body cannot digest or break down sugar, which causes cells to become to saturated with heparan sulfate that they no longer function properly.

Over time, sufferers struggle walk, eat, speak and even sleep.

'As I read and watched the video, I saw Will,' Valerie, of Spring in Texas, told ABC News.

'Honestly I saw that and immediately started sobbing. It takes your breath away. You don't want to get out of bed in the morning.'

She immediately put this to a doctor, who confirmed that Will is a Sanfilippo sufferer.

#SavingEliza: Little girl suffering rare condition shares story

The families are now working together in a desperate bid to find treatment for their suffering children

Desperate for answers the doctors hadn't been able to give them, Valerie and her husband got in touch with the O'Neills, who just had started up a foundation dedicated to finding a cure for Sanfilippo.

The families are now working together, with the O'Neills' foundation, to edge towards research and a cure.

Will has managed to get the last spot on a small list of people to test a new drug for the condition.

'It felt like there was a guiding hand behind this,' Valerie said. 'It's truly miraculous finding out and getting into a clinic with month and a half.'

Eliza has been in isolation for more than a year in preparation for a gene therapy trial. If she had caught a virus in that time, she would no longer qualify.