This is a hard blog entry to write. One because I don't enjoy asking people for money and two because it's never easy talking about this type of subject: ALS. I know it would be easier for you to watch a video or even listen to audio but I can't make it through without crying so this is for the best. I'm raising money in the fight against ALS specifically because of one person: Sarah.
Sarah is my best friend from College. We met freshman year at Marquette University and have been great friends ever since. She even came and visited me while I studied abroad in Spain! I should point out that was her first trip on an airplane! You're thinking what an amazing friend right?! If so, you nailed it. She is an amazing friend and that's why it was so hard to watch her going through losing her Dad to ALS.
Her Dad was diagnosed in 2012 with ALS and I still remember when she first informed me of what was going on. At that time I didn't really know anything about ALS. Nor did she or her family really. It was tough to talk about considering the moment you hear of an ALS diagnosis your heart breaks because at this time there is no known cause, no effective treatment and no cure. She was basically telling me that her Dad was 100% going to die and most likely within a few years. Looking back I wish I would have done more for her but it was hard to talk about. Every time we did talk about it we both ended up in tears and I didn't want to be that person. I know Sarah knows I was there for her if she needed me but you always think you can do more.
Sarah actually felt that way as well, but towards her mom during that time. Sarah's mom is amazing and they are all so lucky to have her. Sarah's Dad noticed something was not right when he was having trouble putting the gallon of milk in the fridge. Imagine going up to your fridge and struggling to put the milk away. Can you really, truly imagine that? It then moved to his legs and he began losing his ability to swallow and cough. Sarah's dad was fortunate that he never lost his ability to talk but it became increasingly challenging toward the end. Sarah's Mom was right there for her husband and family though. In January of 2014, ALS forced Sarah's Dad to retire and shortly after that, Sarah's Mom left her job to care for him full-time. Sarah said "My dad was very fortunate to have my mom to take care of him. She was able to take care of him up until the day he passed away. My three sisters and I would visit most weekends to keep my dad company and try to give my mom a hand. We would help with transfers to the wheel chairs and feedings but my mom did the majority of his care-giving." Sarah also had to give her nephew a shout-out too saying "My five-year-old nephew helped too, with getting the pillows on the bed just right for Dad!" I can only imagine how much that meant to Sarah's Dad. Sarah's Dad passed away June of 2016.
When I asked Sarah what's one thing you want people to know about ALS she responded with this "It is a very difficult disease to watch progress. It is slow moving and every week you notice one more thing the person living with the disease struggles to do. Like buttoning their shirt, brushing their teeth, feeding themselves, walking, holding their head up, and speaking. Dad did what he could though. I will always remember the different techniques he came up with to do things, but even those he could only do for a limited time. I also think it is hard, both physically and mentally, on the caretakers, especially when they are family. Mom never really showed this (even when she broke her foot!), but I think she was uniquely strong willed and knew how to help Dad. Others are not so fortunate. When you see someone you love go through this, where everyday there is something new and it is a constant adjustment and learning process, it is hard enough to mentally process it, never mind having the patience to figure out mobility, nutrition, and communication. You realize how much you take for granted, like being able to swat a fly away or getting ready for bed at night."
I've had a hard time figuring out how to end this because I'm not sure I did a good enough job explaining what a devastating disease ALS is so you understand why I've put away my pride and am asking for donations. The moment you truly understand what ALS is, you'll want to do everything in your power to help find a cure. ALS is the only disease with no known cause and no cure. It's 100% fatal in all cases and approximately 6,000 Americans are diagnosed with ALS each year. That's 6,000 people who know at the moment of their diagnosis they are going to die. We need to change this.
Here's how you can help: time and money. ALS is not incurable, it's underfunded. I would be so grateful if you can donate to my campaign raising money in the fight against ALS. No matter the donation size, I will gladly take what ever amount you can donate.
I also understand if you can't donate any money. If that's the case consider the time option. Sarah and her family were so grateful to all her family, friends, neighbors, etc. for being there for her and her family during that difficult time. She said it was reassuring just to know that people are thinking of your family and letting you know you're not alone. Considering spreading the word in any way you can. Help people really understand the disease and why it's so important to do what you can in the fight against ALS. It's not easy to talk about but it must be done.
You can donate to my campaign here. Thank you so very much!
PS - We're in this together. Make me donate by sharing my Facebook video and check out the things you can get for donating:
My best friend Sarah and I just a couple weeks ago:
Some of Sarah's family at the Chasin' A Cure Tailgate fundraiser for ALS. Sarah's Dad is wearing the cool shades and her mom is on his right: