ALS has no survivors . Zero . The disease is an incurable -- let 's change that -- progressive degenerative neurological disorder . For reasons that are still not completely understood , the nerve cells in my brain and spinal cord will gradually deteriorate . I will ultimately lose the ability to move , speak , swallow and finally breathe . ALS leads to complete paralysis . The average life expectancy is two to five years . Shit . This is not fun to talk about ! I have what is called familial amyotrophic lateral sclerosis . Only 5 % to 10 % of ALS patients have this genetic disposition . My grandmother Marie was diagnosed when I was in middle school . She passed away six years later . My mother , Catherine , was diagnosed when I was in high school and has been living with this disease for 13 years . Although most of my mom 's muscles have atrophied away , she 's the longest living ALS patient in her clinic . She is the most beautiful and inspirational person you will ever meet . Four years ago , I graduated from Loyola Marymount University in Los Angeles and moved back home to help care for my mom . I started a wedding photography business . I photographed weddings on the weekends and would help my mom during the weekdays while my stepfather was at work . I was fulfilling two passions : photographing 40+ weddings a year and spending much needed quality time with my mom . I loved it ! But then my hands , arms and shoulders started getting weak . I was carrying camera equipment all day , and it became increasingly more difficult to change settings and hold up my camera . After a wedding , I felt like I was hit by a bus . I was so incredibly exhausted , and it took my body a long time to recuperate . I thought I was just overdoing it , but realized I could n't ignore the symptoms anymore . On January 27 , 2014 , at 26 years old , I was diagnosed with ALS . That day , hands down , was the most difficult day of my entire life . I cried uncontrollably in the doctor 's office . When I saw family in the waiting room , I just remember repeating the phrase , `` it 's not fair '' as my sister Vanessa hugged me without saying a word . Somehow , I summed up the courage to tell my mom the same day . Words ca n't describe the level of emotional pain she went through . I really hate thinking about it . The next day , I canceled 30 weddings I had booked for that year as a photographer . I sold all of my camera gear to refund the deposits . Since then I 've lost the ability to button my clothes and open bottles . I feel like I have weights strapped to my body . Taking a shower is a workout in itself . It sucks , but I try to be grateful for the abilities I have n't lost yet . The muscles in my upper body are constantly twitching and cramping . It 's a constant annoying reminder that my body is breaking down . I believe this is one of the reasons many people did n't really know what ALS was all about before the ice bucket challenge : No one wanted to talk about a depressing disease with no cure , no hope . My family included . We rarely discussed the lack of support surrounding this disease because it brought too much heartache . `` Be strong and positive for the family '' is what I think most of us had in the back of our minds . But now ALS is finally out of the closet after the ice bucket challenge sensation this summer ! Wahoo ! If there 's one thing I 've learned from my recent experiences is that we have to share our story , even if it 's difficult . How else can we rally the support we so desperately need ? One voice can and will make a difference . The challenge sparked hope , raised awareness and made a huge impact on launching new research initiatives , but we still need funds to find a cure . My family , including my new wife , Laarne , and I have a sense of empowerment that we 've never had before . Priceless . My quality of life is amazing right now , but it 's so great that I do n't want it to stop . It 's bittersweet . I 'm grateful I 've found the love of my life . I just want to spend as much time as I can with her . Let 's change the course of ALS . We 're stronger together . Please join me in this fight , and I 'd be so incredibly grateful .
Marie was diagnosed with Carbajal at two to five years . ALS 's grandmother died from the disease , and his mother is living with it . The survival rate after an ALS diagnosis is 26 years old .