Comments on: Speed4Jodi

By: Gregory Pellegrino

Gregory Pellegrino — Thu, 24 Nov 2016 13:20:07 +0000

God Bless all the PALS and their caregivers…

Marianne, you wouldn’t happen to be from the NY/NJ area, would you?? I am currently in the process of being diagnosed, and I see that your husband had ALS. I also see that we share the same last name..

Just curious. Thank you and Happy Thanksgiving!

By: Marianne Pellegrino

Marianne Pellegrino — Tue, 07 Apr 2015 03:05:46 +0000

Thanks so much for your story. You and your family are in my thoughts and prayers. My husband,Dan, had Als. He was such an inspiration to many. He may of had Als but Als didn’t have him. He had such great courage and dignity through the whole process. He was a remarkable person. It is so true the bond that you have with family and friends through this process is unwavering. We were blessed to have them with us. Someday, there will be a cure we only can hope. At least there has been a lot of awareness over the last couple of years.

By: Sylvia Coburn

Sylvia Coburn — Fri, 03 Apr 2015 20:03:54 +0000

OMG! This is one of the most cruel diseases there is out there. My daughter Misty has SMA and is 37 now. She has accomplished so very much in her young life so much more than even me and all because of who she is and has never felt sorry for herself and has always tried to adapt as best she can to different situations. She looks at it as “well if I cannot not do this like everyone else I will figure out another way to do it” now that does not work foe EVERYTHING of course, but this is her mindset, this is who she is. She has however lived with a lot of suffering and as in the story above there is nothing worse than having to watch your child who loves living so very much have to go through everything they do. I have learned so much about this disease, and ALS . How very very cruel they are and what it does to a parent and their loved ones to slowly watch them become weaker and weaker over time. Misty is really struggling right now to continue to be able to feed herself, she cannot put her makeup on or paint her fingernails anymore which she always so enjoyed doing. It is a lot of the smallest things we all take for granted. She is my reason for living and for now my angel here on earth. My heart breaks over the story above. Not only did she have ALS but a severally disabled child herself. She had to leave her children and husband and also be sick and lose her child before she passed. God bless her and her sons soul and the only thing I can say is her and her son are reunited at last.