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Strikeout ALS: My Cousin Goes to Battle

J

jlukes

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My cousin was diagnosed with ALS last year at the age of 30. He is married, has two little boys, and recently medically retired from the US Navy. He has taken his diagnosis as a challenge, and he will not back down. He got to address the Philadelphia Phillies in their locker room last week and his words still give me chills. This was my cousin and my friend, who I grew up playing army , having sleepovers, and going to football games with, and at only 30 years of age (now 31), he must fight this battle.

http://m.mlb.com/video/topic/8877464/v140553083/?source=MLB&c_id=mlb&tcid=facebook_embedded_player

Matt is doing a ton of work with ALS TDI (http://www.alstdi.org/) as they try to find the cure for ALS. Here's to hoping they find a cure soon.

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Matt and his family being honored by the Yankees at Lou Gehrig's day last year
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Me (wearing Matt's old pilot helmet) and Matt
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My heart truly goes out to your family Joe. As many have seen with previous posts and threads I have made, I lost my mother to this vicious disease about 2 years ago. I dedicate all of my fundraising efforts to ALS in hopes that future generations will not have to endure the truly heartbreaking experience of watching a family member or friend succumb to ALS. Thank you for sharing this story and I wish nothing but the best to your cousin and your family. Feel free to reach out to me at any time for whatever you may need or want to discuss. I am with you brother!
 
Really appreciate that, Scott and my heart definitely goes out to you as well. Thankfully, my cousin is progressing EXTREMELY slow. He has been showing symptoms for over 2 years and formally diagnosed for 13 months, yet he still is able to walk and drive which is incredible. I believe to this day he has only lost 3 points on the functional rating scale (while the average ALS patient loses 1 point per month!).

He is truly inspiring us and we hope that the medical industry can find a cure in his lifetime because he, and all ALS patients, surely deserve it
 
Tough stuff Joe. Wish him and your family the best.
 
Joe, I couldn't watch that video without my eyes watering up. I truly hope you cousin can continue to fight and have as much quality time with his family as possible. Making a donation today.
 
Really sorry to hear this Joe but glad to see hes not lettimg this beat him and is instead choosing to go out and fight the good battle
 
Matt says he now keeps a list in his left pocket and a list in his right pocket.

In the left is a list of things he loves doing, that he won't be able to do, when he is bound to a wheelchair. Things like picking up his kids, driving, playing with his dog.

In the right is a list of things he hates doing, that he won't have to do, once he is bound to a wheelchair. Things like taking out the trash, etc.

Just really an incredible attitude about the whole thing.
 
Good luck with this journey, I'm glad that ALS has come more to the front with research over the last year or so. It's great to see you being an awesome cousin/brother to Matt. I pray that this disease (and others) have a cure soon.
 
My heart and my prayers go out to you and your family. I lost my mother in law to this terrible disease 4 years ago. She survived for approx. 18 months after diagnosis. ALS has become our family's main charity to find a cure to help further generations to end this disease.
Joe
 
So sorry to hear about your cousin Joe. I love his attitude and how he is battling this head on. Truly inspirational. I wish you and your family all the best
 
I'm warning you now Joe, any movie, doumentary, etc you watch that features someone with ALS is guaranteed to turn your eyes into fully engaged faucets. There are a couple of documentaries (one featuring a high school football coach in a small town in GA) on Netflix and a recent movie starring Hilary Swank that were absolutely outstanding but very tough watches for people that are very close to the disease.
 
Sox Fan said:
I'm warning you now Joe, any movie, doumentary, etc you watch that features someone with ALS is guaranteed to turn your eyes into fully engaged faucets. There are a couple of documentaries (one featuring a high school football coach in a small town in GA) on Netflix and a recent movie starring Hilary Swank that were absolutely outstanding but very tough watches for people that are very close to the disease.
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Yup, i know exactly what you mean.
 
the video of his speech to the Phillies is incredibly moving. Such an awful disease.
 
ddec said:
the video of his speech to the Phillies is incredibly moving. Such an awful disease.
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Yeah, my family were doing just fine watching the video until he brings up his sons (Kip and JP). Those two little boys are just absolutely incredible and his wife (Caitlin) is an absolutely rock. Such a great family. Thankfully the Navy moved him closer to us so we can spend more time with him and his family.
 
My thoughts and prayers go out to your cousin, you and your family. Locally, there is the Packard Center for ALS Research at Johns Hopkins. My wife and I will be making a donation to the Center in honor of Matt Bellina for his courage and commitment to others as well.
 
My thoughts and prayers are with you, your cousin, and your family. Having had a family friend who suffered through this awful disease, Matt's courage is amazing. I am constantly hoping for a cure to this awful awful disease.

Dan
 
ALS is a bi**h. I am sorry that this awful disease has sank it's claws into your family. I will pray for your cousin. On a positive note maybe they can take a look at your cousin and try and see what in his body seems to be delaying the affect of the disease compared to normal as you stated. Maybe he holds the key to beating this thing.
 
Praying for you and your family. One of my Travel Baseball teammates had a father who passed from ALS. It was terribly tough to watch him go through it, and I cannot imagine actually going through it. Thoughts and prayers to Matt and his family.
 
Brutal disease, prayers to Matt and his family, and praying they find a cure soon.
 
I dont know ur cousin, but u seem like a great person and in sure he is as well. For the life of me I will never understand why the good people get sick and suffer yet the scum of the earth abuses their bodies their whole lives and continue to live into theor senior years. I have thought about this since my father died prematurely almost 4 years ago. The only thing I can tell u is that God must have a plan and its not our place to understand. Enjoy and cherish every second with your cousin, my Dad was gone suddenly with no warning sign and indicator that something was wrong, and I over analyze how I should have been their more, and seen him more that month. Take pictures, make movies, enjoy each other. And im sure I dont have to tell u but take care of his family when the time comes. Good luck Joe ur cousin will definitely be in my prayers.
 
ALS TDI is an outstanding organization that focuses on research and finding a cure for this horrible disease. My dad, who was an avid golfer, caddy supporter and U.S. Army veteran had ALS as well. I wish you comfort and strength in the coming years.
 
My cousin has been featured in an article on FoxNews.com

http://www.foxnews.com/health/2015/...l-as-2nd-year-ice-bucket-challenge-kicks-off/

However, a quick note from him regarding any articles that are being written about him:

I don't care how many times I tell these reporters that I got grounded in training, they keep insisting on saying I flew combat missions. I guess this sells better than the truth? The truth is more important though. The Navy spent millions of dollars training me for four and a half years only to lose all that human capital to ALS. After that, I did go overseas in other capacities, but not as a "Navy Combat Pilot". Now the VA will spend millions of dollars caring for me. Massive waste of money that will continue to burden the taxpayer until somebody sees the cost effectiveness of curing this disease.
 
Thanks for sharing that great article Joe. Glad to hear the disease is still progressing slowly in your cousin!

Looks like I need to get the ice bucket out this weekend!
 
I will be praying for him and his family. God bless them. I'm glad he's been able to do a lot not just for himself, but for all who suffer from the disease.
 
A radio station I listen to runs commercials that state that veterans have a much higher rate of ALS than the rest of the population. These poor guys and girls have it rough.
 
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