Team Paul
Donation protected
Dear friends,
As many of you know, our father, Paul Jensen was diagnosed with ALS in January of 2018. Prior to his diagnosis, we only knew about ALS because of the ice bucket challenge and had no idea about the reality of its mental, physical, and financial toll. To summarize, ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. This is a fancy scientific way of saying that ALS freakin’ sucks. It is absolutely heartbreaking and horrendous and slowly takes away a person’s ability to control the muscles needed to move, speak, eat, and breathe. There is no cure. Over the past two years, we've watched Paul’s body fail him at different milestones of the disease. Despite his deteriorating physical state, he has always stayed true to himself. He is relentlessly positive and the kindest, most loyal goofball on the planet.
As you also may know, Paul is an important member of the Jensen Team, which consists of him, our phenomenal mother, Cecil, and us: Claire, Carlisle, and Grace. Mix in a few dogs and that is our family. Paul and Cecil––a.k.a. Peppy and Pauly––are the hardest working, kindest, and best parents ever in our obviously unbiased opinions. The three of us would not be where we are today (currently Italy, Vietnam, and Nantucket) without them. They taught us to follow our dreams, take risks, and be kind no matter what. This has led us to studying medieval art in Naples, riding water buffalos in Vietnam (while on a break from teaching elementary school), and adopting a dog and building a life on Nantucket. There is nothing we want more than to take care of our parents and give back to them as they have supported us.
The costs of living with ALS are astronomical. Our family has slowly had to make sacrifices to adjust to our new normal. In the past year, Paul has gone from using a cane, to a walker, to a wheelchair, to a scooter, and now a super cool electric wheelchair that can elevate him up to eye level! We invested in a big van with a snazzy lift to take him to the hospital, clay class at the Artist’s Association, out to dinner, and even the pool so he can keep swimming (trust us, his backstroke is still better than any of ours). In the house, we've raised tables, removed rugs, and installed ramps. We are currently in the process of renovating our parents bathroom so that he can safely shower, brush his teeth, and you know...other stuff :). Anyone who knows us, knows that we are all a bunch of homebodies who love nothing more than sitting around our kitchen table playing games, doing puzzles, and laughing. Paul is no exception and we want to do everything we can to help him be comfortable in his own home.
This is where the GoFundMe comes in. At the moment, neither Paul nor Cecil is able to get a good night's sleep in their current bed. On top of everything else they go through dealing with ALS, it is terrible to think that they are not sleeping! Our ideal solution is basically a split California King with a special mattress recommended for people with mobility issues. The bed's ability to elevate and recline would keep Paul in the best position to breathe while sleeping and also make it safer to navigate getting him in and out. This technology would certainly give Cecil peace of mind and more space to get a good night's rest, something she desperately needs as our family's rock, Paul's primary caregiver, and an invaluable Nantucket community leader. We wish we could move mountains and give them the most magical bed to meet both of their needs. However, as a Ph.D. Student, Nonprofiteer, and recent college graduate, we simply cannot afford it on our own. Our parents are hard workers and always the LAST people to ask for help, but considering all the expenses that are constantly mounting related to Paul's care, we thought that in this case it might be worth a shot.
The perfect bed for Paul and Cecil costs approximately $3,000. This does not include shipping and other costs associated with buying a new major piece of furniture. Hence why we have upped the ante a bit :)
If you are able, please consider donating to help us fund it at the link below. Any amount you can contribute is helpful! We cannot thank you all enough for the love, support, food, and company we've received since his diagnosis in 2018. The generosity of friends, acquaintances, and even strangers is truly awe-inspiring and above and beyond anything we could've ever expected. Team Awesome took a hit, but is still plenty strong because of people like you! Thank you so much for your help.
As many of you know, our father, Paul Jensen was diagnosed with ALS in January of 2018. Prior to his diagnosis, we only knew about ALS because of the ice bucket challenge and had no idea about the reality of its mental, physical, and financial toll. To summarize, ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. This is a fancy scientific way of saying that ALS freakin’ sucks. It is absolutely heartbreaking and horrendous and slowly takes away a person’s ability to control the muscles needed to move, speak, eat, and breathe. There is no cure. Over the past two years, we've watched Paul’s body fail him at different milestones of the disease. Despite his deteriorating physical state, he has always stayed true to himself. He is relentlessly positive and the kindest, most loyal goofball on the planet.
As you also may know, Paul is an important member of the Jensen Team, which consists of him, our phenomenal mother, Cecil, and us: Claire, Carlisle, and Grace. Mix in a few dogs and that is our family. Paul and Cecil––a.k.a. Peppy and Pauly––are the hardest working, kindest, and best parents ever in our obviously unbiased opinions. The three of us would not be where we are today (currently Italy, Vietnam, and Nantucket) without them. They taught us to follow our dreams, take risks, and be kind no matter what. This has led us to studying medieval art in Naples, riding water buffalos in Vietnam (while on a break from teaching elementary school), and adopting a dog and building a life on Nantucket. There is nothing we want more than to take care of our parents and give back to them as they have supported us.
The costs of living with ALS are astronomical. Our family has slowly had to make sacrifices to adjust to our new normal. In the past year, Paul has gone from using a cane, to a walker, to a wheelchair, to a scooter, and now a super cool electric wheelchair that can elevate him up to eye level! We invested in a big van with a snazzy lift to take him to the hospital, clay class at the Artist’s Association, out to dinner, and even the pool so he can keep swimming (trust us, his backstroke is still better than any of ours). In the house, we've raised tables, removed rugs, and installed ramps. We are currently in the process of renovating our parents bathroom so that he can safely shower, brush his teeth, and you know...other stuff :). Anyone who knows us, knows that we are all a bunch of homebodies who love nothing more than sitting around our kitchen table playing games, doing puzzles, and laughing. Paul is no exception and we want to do everything we can to help him be comfortable in his own home.
This is where the GoFundMe comes in. At the moment, neither Paul nor Cecil is able to get a good night's sleep in their current bed. On top of everything else they go through dealing with ALS, it is terrible to think that they are not sleeping! Our ideal solution is basically a split California King with a special mattress recommended for people with mobility issues. The bed's ability to elevate and recline would keep Paul in the best position to breathe while sleeping and also make it safer to navigate getting him in and out. This technology would certainly give Cecil peace of mind and more space to get a good night's rest, something she desperately needs as our family's rock, Paul's primary caregiver, and an invaluable Nantucket community leader. We wish we could move mountains and give them the most magical bed to meet both of their needs. However, as a Ph.D. Student, Nonprofiteer, and recent college graduate, we simply cannot afford it on our own. Our parents are hard workers and always the LAST people to ask for help, but considering all the expenses that are constantly mounting related to Paul's care, we thought that in this case it might be worth a shot.
The perfect bed for Paul and Cecil costs approximately $3,000. This does not include shipping and other costs associated with buying a new major piece of furniture. Hence why we have upped the ante a bit :)
If you are able, please consider donating to help us fund it at the link below. Any amount you can contribute is helpful! We cannot thank you all enough for the love, support, food, and company we've received since his diagnosis in 2018. The generosity of friends, acquaintances, and even strangers is truly awe-inspiring and above and beyond anything we could've ever expected. Team Awesome took a hit, but is still plenty strong because of people like you! Thank you so much for your help.
Organizer and beneficiary
Carlisle Jensen
Organizer
Nantucket, MA
Cecil Barron Jensen
Beneficiary