Jason Carr's ALS Journey

$6,165 of $1 goal

Raised by 48 people in 19 months
Danielle Hamilton Carr  HOPKINS, MN
Jason's symptoms started five years ago.  They would come and go and initially seemed to be more of a nuisance than a  precursor to a life altering diagnosis of ALS (Lou Gehrig's Disease).  Unfortunately, ALS is very difficult to diagnose because it is a rare neuro degenerative disease--Jason could not put a name with his symptoms until his diagnosis in April 2015.

We have since completed the renovation of our three level 1910 farmhouse and sold it to prepare for what was and is looming around the corner.  Jason has lost his mobility and is now dependent on his power wheelchair.  We moved to a one level home better suited for his declining condition. 

He can no longer perform his job as a carpenter due to the physical challenges he is facing.  In the two years since his diagnosis and his recent physical challenges, it has become a necessity for him to have full-time support.  It made the most since for me to transition from my job to be with him as his caregiver, provide the additional emotional support to our boys, and keep my head clear to focus on our family.  Hence, a pretty substantial blow to our family's income. 

We have two young boys, Caleb (13) and Hollis (8).  That has been the most difficult part of grasping the unknown hurdles ahead.  There is no cure and we have no way of knowing how much time we have together. 

Promising developments have been made in ALS research and we remain hopeful that we will be able to see some of those results as Jason receives care from the Mayo Clinic.  He was enrolled in a stem cell study out of Israel (Brainstorm) that has shown some very positive results for other patients.  Though he received the placebo, we remain hopeful that his participation will benefit other neurological patients of ALS, Parkinson's, MS, and many others.

For those who know Jason, he is a devoted father, friend, and partner in life.  He's passionate about music, reading, politics, exploring, carpentry, and hiking.  He is a gifted writer and I encourage you to read his blog @ https://jcsjournalblog.wordpress.com/author/jcsjournalblog/

Our family needs your support whether it is a visit,  help around the house, and/or money.
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Update 13
Posted by Jason Carr
1 month ago
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Big news and big decisions in our home. After 5+ years with CBRE (my super awesome employer), I have decided to transition to being Jason's full-time caregiver. I struggled with this decision for three reasons; monetary, insurance, and the amazing people I was so fortunate to work with (my partner, director, supervisor, colleagues, clients). As Jason's needs have grown, so have my parental duties and the need for supporting our children while they navigate ALS. It's hard to believe it has been almost two years since diagnosis. Our boys are now 13 and eight. They have always been at the top of our worry list and even more so with grappling with how to parent when one of the parent's bodies is failing them. How do you provide them with a "normal" upbringing and make them feel secure and loved? The demands of a career that required my attention outside of my caretaker role, were beginning to impact my ability to parent at the level they need. There are daily changes with Jason and a huge learning curve. Who knew the day would come when I would need to brush his teeth, help him in and out of bed, dress him, wash him at 42... you get the picture. Our children have learned how to adapt to his progression. They look at the world a little differently from their peers, they have wisdom beyond their years, and I am so proud of the way they too have learned to show their love and care for their dad. We laugh a lot, spend more time together, decline fights about the little things, because we know time is fragile. Trust me, there are moments when we lose sight of the big picture. We get tired, scared, anxious. But we also build each other up and form a strength that is beyond anything I thought I was capable of. I have learned more in the past two years of my life, then in my entire adulthood. There are so many beautiful people out there and often times they are hidden gems, strangers, colleagues buried in paperwork in that part of the office you never dared enter, old friends from grade school, partially retired strangers listening to hip hop stations... good people come out of the most unexpected places and then there are steady members who helped build our village, our parents, siblings, extended family, and friends.

Jason is adjusting very well to his wheelchair. He enjoys the renewed mobility and no longer is tethered to his lift chair in the living room. He can roam freely in our home, eat dinner with the family, chase the pets with his chair, and hang-out while I cook.

Freedom (even if limited) is a beautiful thing.
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Update 12
Posted by Jason Carr
2 months ago
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2016 has been filled with good, bad, and ugly. I have found some unexpected beauty in our mission to swim over the tides of ALS and some unexpected unpleasantries. A quick rant to the police officer who gave me my first and only speeding ticket in my 26 years of driving without the courtesy of issuing a warning or asking why I may have been speeding. In truth I was avoiding hitting the car in front of me who slammed on their brakes when they saw him, so I passed and hit the gas to not be hit by another car. I got clocked at the wrong time. I was distraught enough at the time, I decided not to fight it. I was on my way to the hardware store to get salt to melt enough ice off our deck for Jason's ramp--I was distraught. I considered giving the officer my sob story, but decided it wasn't worth it. The officer was young and I knew he wouldn't soften. He seemed puffed up and overly pleased to be pulling over a middle aged harried mom. I was bummed when I returned home--but I did avoid an accident and it could have been worse. When I shared my grief with Jason, he laughed and said he couldn't believe that I had eluded a ticket this long. I concurred, I do have a little bit of an issue with losing track of my acceleration.

So this unfortunate "karma" came on the heals of two bits of good news. First, our good fortune of having an allowance for an exterior ramp gifted to us from the KDWB wish gift and Ramps R Us who heard of the gift calling to say they would cover any expense and labor over that allowance (thank you, Gary!) and then the Always Lucy Strong project called today to inform us that we won the first ever ALS family vacation! Lucy is a warrior of bulbar onset ALS (diagnosed a month before Jason) and her children started this beautiful tribute to their mother to award families struggling with ALS' financial teeth, with the gift of time and travel with the ones they love. I applied for the opportunity because I desperately wanted to give our children the opportunity to advocate for ALS advancements in Washington DC. Jason and I were able to do this last year and met with great success. We feel it is important to involve our boys in advocacy and help them to understand the power of their voice and love for their dad. Lucy Strong is sending all four of us to DC! We are so excited!

As my dad often says, "most things are good". As I have aged, I have come to understand that, no matter how dark things may seem to get, there are always glimmers of good.

Winter in Minnesota, can make me lose sight of that. I can become a winter curmudgeon, but some things are indeed good.

PS. Our insurance company denied Jason's wheelchair need. This may be contributing to my snarky demeanor. #cignaeatstheirown
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Update 11
Posted by Jason Carr
3 months ago
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Once again, my incredible co-workers rallied behind our family. We are so thankful for their support! http://kdwb.iheart.com/features/dave-ryans-christmas-wish-1151/articles/15/495416/carr-familys-christmas-wish-15358991/
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Update 10
Posted by Jason Carr
4 months ago
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Mexico is so beautiful and we feel so grateful to my parents for giving us this opportunity to unwind and change up the atmosphere.

It's a challenge for Jason to leave our home now, so soaking up some Vitamin D and breathing in the ocean breeze have been very good medicine. We have been regulars in Nuevo Vallarta over the past 15 years with occasional trips to Puerto Vallarta. He won't be going to Puerto Vallarta anymore--he can't navigate the old town sidewalks and steep doorways in his scooter. He won't walk out to the tip of the sandy tip that pokes out to where the ocean meets the bay. He won't swim in the over abundance of pools in this lush playground.

This trip is different. He will breath in life, laugh with our family and even the honorary member who has joined us, tap into the aromas of kitchens, and nature that surrounds us. He will write and reflect on life. He will teach us how to age with grace and rise to the beauty of life everyday. I am so thankful for this journey with him.

Wishing everyone a Happy Thanksgiving.
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$6,165 of $1 goal

Raised by 48 people in 19 months
Created September 2, 2015
Danielle Hamilton Carr  
$75
Steph and Paul Lee
18 days ago
$80
Anonymous
21 days ago
BL
$230
Bonnie & Walt Lee
28 days ago

Keeping you and your family in my thoughts and daily prayers.

$25
Anonymous
1 month ago
PE
$150
Penny Ellis
1 month ago
HN
$50
Hoa Nguyen
1 month ago
$100
Steph and Paul Lee
1 month ago
$100
Anonymous
3 months ago
JE
$200
Jimi Ellis
3 months ago

Much love, Jimi

$100
Anonymous
3 months ago
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