The invite was sent, photographers were on hand, and even Murrieta’s Mayor Allen Long was in route for the next Ice Bucket Challenge. A team of reporters from the Valley News was standing on the doorstep of Murrieta resident Anthony Carbajal’s home, ready to roll when the event came to a halt, frozen without notice.
Carbajal made an ice bucket challenge video that went viral. In his video, not only did he talk about his family’s battle with the disease known as Amyotrophic Lateral Sclerosis, he challenged talk show host and comedian Ellen DeGeneres and pop singer Miley Cyrus to take the challenge as well.
Carbajal’s video had caught the attention of DeGeneres’ producers. The ice bucket challenge to DeGeneres was accepted and as a result, Carbajal’s contract stated he could not do media interviews until his segment on Ellen airs on television, bringing the event scheduled for last Friday to a screeching halt.
As a result, Carbajal’s sister Vanessa spoke for her brother, freezing the interview and Mayor Long’s ice bucket plunge.
Carbajal now has a national platform to raise awareness for ALS and the community is invited to rally behind a neighbor whose family has been suffering for years. Although Carbajal cannot speak directly with the Valley News this week due to contractual constraints, the story of he and his family’s personal struggle with ALS is one of the reasons his ice bucket challenge has garnered attention in the national spotlight.
Carbajal’s version of an ice bucket challenge included washing a car in his sister’s pink shorts and a red bikini top showing off his sense of humor. Carbajal’s humorous approach seemed to hook viewers into watching his train wreck of a car wash. Once he flipped the switch and got real with his captive audience, a face was given to ALS, showing him as a goofy brother, a caring son and a scared, vulnerable yet brave man.
Carbajal has been caring for his 43-year old mother stricken with ALS. In his video posted on YouTube, he shows his mother and how she needs help going upstairs, getting into bed, eating, and breathing.
“I have been so terrified of ALS my entire life because it runs in my family,” he said in the video. “My grandmother had it; she was a second mother to me. My mother was diagnosed with it when I was in high school, and five months ago I was diagnosed at 26 years old.”
Carbajal does not try to sugar coat the truth of this disease, “ALS is so so f****** scary you have no idea.” He then addressed those who criticized the waterfall of ice bucket challenges shown all over social media.
“I promise your newsfeed will go back to cat videos and “Let It Go” covers, but right now, the ALS community has the main spotlight, and for once in my entire life, I’ve seen it in the forefront,” Carbajal said.
Carbajal went on to attack the pharmaceutical companies who he claims have not done enough to try and find a medicine to curb or cure the disease.
“I am not profitable, I am not worth saving,” said Carbajal who then admitted he was already experiencing the symptoms of ALS in his hands. “I am having trouble starting my car and buttoning my shirt. Eventually I won’t be able to use my hands or arms at all.”
Researchers still do not know what causes ALS. Though, in 1993 scientists supported by the National Institute of Neurological Disorders and Stroke (NINDS) discovered mutations in the gene that produces the SOD1 enzyme were associated with some cases of familial ALS.
According to NINDS, researchers are studying the role of environmental factors such as exposure to toxic or infectious agents, as well as physical trauma or behavioral and occupational factors.
Veterans who were deployed to the Gulf region during the 1991 war show signs and they are more likely to develop ALS compared to military personnel who were not in the region.
ALS does not discriminate. People of all races and ethnic backgrounds can be affected. However ALS is more common among white males and non-Hispanics.
The NINDS organization reports only five to 10 percent of all ALS cases are inherited.
The ALS Association announced on their main page as of Sunday, August 24, they have received $70.2 million in donations compared to $2.5 million during the same period last year. The organization also grew it donors by 1.3 million.
Carbajal and other ALS sufferers are hoping and praying the millions raised will lead to a cure or at least a better quality of life while managing the disease.
Carbajal will make his appearance on Ellen September 8.
You can view the entire video and make donations at: http://www.youcaring.com/medical-fundraiser/for-anthony-with-love/133001.