ALS patient makes Ice Bucket Challenge video for those 'irritated' by the trend

“I promise your news feed will go back to cat videos but right now the ALS community has the main spotlight," Anthony Carbajal tells viewers

A month into a trend which has seen athletes, celebrities and a former world leader being drenched with ice cold water to raise awareness for Amyotrophic lateral sclerosis (ALS), the internet has started to yawn in boredom.

Now, in a funny, frank, and deeply touching video that has garnered over 3 million views in just four days, photographer Anthony Carbajal, who suffers from the form of motor neurone disease, has delivered a blow to critics of the Ice Bucket Challenge videos.

The video begins with the 26-year-old cheekily showing off his shocking pink shorts with “Kiss my ALS” emblazoned across the back, dressed in a tiny red bikini top. Like Britney, Hayden Panettiere, and Vin Diesel before him, Carbajal nominates a string of celebrities, including talk show host Ellen Degenes, and singer Miley Cyrus, to take the challenge before his friend soaks him.

But in contrast to celebrity videos of the challenge, which have been criticised for barely mentioning the disease, the scene cuts to Carbajal in his home where he shows viewers the realities of living with the degenerative disease.

Read more: Gwyneth Paltrow takes on ALS ice bucket challenge

“ALS is so f*cking scary you have no idea,” he says, his eyes bloodshot from crying. 

The disease affects the brain and the spinal cord, causing motor neurons to degenerate and die which makes it increasingly difficult for sufferers to move their muscles.

When their muscles aren’t used enough, they stop working entirely and patients with ALS begin to feel weak, have difficulty speaking, swallowing and breathing. In the later stages of the illness, patients may become totally paralysed.

“I have been so terrified of ALS my entire life because it runs in my family. My grandmother had it, my mother was diagnosed when I was in high school, and five months ago I was diagnosed at 26 years old."

The photographer goes on to explain that his hands are beginning to atrophy, and that he has noticed it is more difficult to start his car, and button up his shirt. “Eventually I won’t be able to use my arms and hands at all," he tells viewers.

Over footage of Carbajal tenderly caring for his disabled mother, 43-year-old Catherine Scott, he explains: “I really hate talking about it, and that’s probably why nobody talks about it.

"Nobody wants to see a depressing person that’s dying and has two to five years to live. They don’t want to talk about it they don’t want their day ruined,” he says starkly.

“I promise your news feed will go back to cat videos and Let It Go covers but right now the ALS community has the main spotlight.”

He ends by apologising for his “rant” and his “tears”, and adds: “if I simply dump ice on my head I don’t think you’re really going to get the point”.

Since Charles Kennedy, a golfer in Florida, started the Ice Bucket Challenge trend, more than $22.9 million has been raised for the cause.

Start your day with The Independent, sign up for daily news emails
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
Independent Dating
and  

By clicking 'Search' you
are agreeing to our
Terms of Use.

iJobs Job Widget
iJobs People

Recruitment Genius: HR Manager

£25000 - £30000 per annum: Recruitment Genius: They are in need of a HR Manage...

h2 Recruit Ltd: Business Development Manager - HR Consultancy - £65,000 OTE

£35000 - £40000 per annum + £65,000 OTE: h2 Recruit Ltd: London, Birmingham, M...

Day In a Page

Homeless Veterans appeal: 'You look for someone who's an inspiration and try to be like them'

Homeless Veterans appeal

In 2010, Sgt Gary Jamieson stepped on an IED in Afghanistan and lost his legs and an arm. He reveals what, and who, helped him to make a remarkable recovery
Could cannabis oil reverse the effects of cancer?

Could cannabis oil reverse effects of cancer?

As a film following six patients receiving the controversial treatment is released, Kate Hilpern uncovers a very slippery issue
The Interview movie review: You can't see Seth Rogen and James Franco's Kim Jong Un assassination film, but you can read about it here

The Interview movie review

You can't see Seth Rogen and James Franco's Kim Jong Un assassination film, but you can read about it here
Serial mania has propelled podcasts into the cultural mainstream

How podcasts became mainstream

People have consumed gripping armchair investigation Serial with a relish typically reserved for box-set binges
Jesus Christ has become an unlikely pin-up for hipster marketing companies

Jesus Christ has become an unlikely pin-up

Kevin Lee Light, aka "Jesus", is the newest client of creative agency Mother while rival agency Anomaly has launched Sexy Jesus, depicting the Messiah in a series of Athena-style poses
Rosetta space mission voted most important scientific breakthrough of 2014

A memorable year for science – if not for mice

The most important scientific breakthroughs of 2014
Christmas cocktails to make you merry: From eggnog to Brown Betty and Rum Bumpo

Christmas cocktails to make you merry

Mulled wine is an essential seasonal treat. But now drinkers are rediscovering other traditional festive tipples. Angela Clutton raises a glass to Christmas cocktails
5 best activity trackers

Fitness technology: 5 best activity trackers

Up the ante in your regimen and change the habits of a lifetime with this wearable tech
Paul Scholes column: It's a little-known fact, but I have played one of the seven dwarves

Paul Scholes column

It's a little-known fact, but I have played one of the seven dwarves
Fifa's travelling circus once again steals limelight from real stars

Fifa's travelling circus once again steals limelight from real stars

Club World Cup kicked into the long grass by the continued farce surrounding Blatter, Garcia, Russia and Qatar
Frank Warren column: 2014 – boxing is back and winning new fans

Frank Warren: Boxing is back and winning new fans

2014 proves it's now one of sport's biggest hitters again
Jeb Bush vs Hillary Clinton: The power dynamics of the two first families

Jeb Bush vs Hillary Clinton

Karen Tumulty explores the power dynamics of the two first families
Stockholm is rivalling Silicon Valley with a hotbed of technology start-ups

Stockholm is rivalling Silicon Valley

The Swedish capital is home to two of the most popular video games in the world, as well as thousands of technology start-ups worth hundreds of millions of pounds – and it's all happened since 2009
Did Japanese workers really get their symbols mixed up and display Santa on a crucifix?

Crucified Santa: Urban myth refuses to die

The story goes that Japanese store workers created a life-size effigy of a smiling "Father Kurisumasu" attached to a facsimile of Our Lord's final instrument of torture
Jennifer Saunders and Kate Moss join David Walliams on set for TV adaptation of The Boy in the Dress

The Boy in the Dress: On set with the stars

Walliams' story about a boy who goes to school in a dress will be shown this Christmas