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Windchime Wishes Limited is a verified 501(c)3 Public Charity, so each donation is tax deductible. As we transition into open rentals, as opposed to the modifications and construction needs, your donation counts toward bringing a patient and their family to John-boy's Place for a week, free of charge, and keeping the home and property safe and accessible. We regularly have needs that relate to property upkeep, insurance, maintenance and repair. Patients who are brought in under the auspices of the nonprofit are given additional perks and amenities, such as groceries, paid caregiver time, free meals from the community and local discounts.
John-boy's Place
What's the big deal?
There is a large underserved group of patients for whom one last vacation with the kids/family can never happen. Levels of accessibility are NOT uniform across all disease processes, nor are the current market offerings touting "accessibility". Motor neuron diseases like ALS and PLS randomly steal muscle, strength, balance, and dexterity away from their victims; there is no standard course of progression, and a patient can lose function in one or more limbs or muscle groups without warning, creating a dangerous fall risk. Additionally, conditions like traumatic brain injury and spinal cord injury can turn a patient's world upside down and suddenly change the way that they live every day. Some of these patients may live for years, while others may run a faster course or progression, but either way, it tends to affect whole families, as each member adjusts to the new way of life and the demands of becoming a caregiver. The patients themselves struggle with unbelievable stressors, and even the best attitude cannot completely keep guilt and sadness out of the equation. Besides accepting the physical changes that one is facing, losing independence to do so many little things for yourself, the ability to perform simple functions like brushing your teeth or adjusting your pillow...these can build up and make patients feel helpless and hopeless. Windchime Wishes Limited wants to create opportunities for happy moments, for inclusive activities, and for independent actions where feasible. To some it may seem like just a vacation, but if accessibility and inclusivity are specifically addressed, it could be the vacation of a lifetime!
Why does it matter?
In my own experience, the darkness in the distance made me desperately want to plan just one last adventure or vacation so that my kids could make some GOOD memories to get us through the bad ones to come. Unfortunately, caregivers cannot be sure that a destination will truly be a safe place for their loved one, depending on physical limitations. For instance, electric wheelchairs can be too wide to get in standard doors. Sinks may not be open underneath so that a wheelchair bound person can maintain just a bit of autonomy by reaching the faucet handles by themselves. Some people depend on lifts and ceiling tracks to go from room to room; imagine your sweet 98lb Mom trying to put your partially paralyzed 180lb Dad into a wheelchair to go to the bathroom, by herself. For many, once a hospital bed, wheelchair and hoyer lift are needed at home, a person is basically imprisoned in that space. I was struck by the need to provide a dedicated, tried and tested place where mobility aids and safety were the priority, and where emphasis could be taken OFF of worrying about the details, so that simple moments like watching your kids fishing on the bank of a quiet lake or playing cards or ping pong underneath the house can happen. We never got our last good adventure...ALS beat us to the punch line. Windchime Resources will win the next round, though.
Share the big news
After owning this amazing property since August of 2021, and many days and nights of searching for funds and help, and then many MORE, John-boy's Place will officially welcome its first ALS family on Christmas Eve, 12/24/2022. This has been the most exhausting and rewarding and frustrating and detailed endeavor that I have ever been a part of, much less in charge of, but my Faith and my dedication to completing it have never waivered. Over the long months of working out details and fundraising, I have had the opportunity to speak with SO many people affected by disability and mobility challenges, and so many of the stories are typical of what John and I found - accessibility is not guaranteed, even in major hotel chains, and the LEVEL of accessibility needed for patients with ALS, TBI, SCI and their caregivers is even less prevalent across the board. John-boy's Place is my attempt to level the playing field for people living with disabilities and create opportunities for the simplest of things ~ making memories doing the little things in life, in a safe, specifically modified space.
WHY Concentrate on ALS?
It's crazy to me to think of all of the funding and energy that goes into some diseases and conditions, that DOESN'T go toward ALS. Some people still believe it is a rare disease, and wow, you've got to be pretty unlucky to end up with ALS. I call BS on that here and now. It is NOT rare. It is underreported, underdiagnosed, and way underfunded. The Federal Gov't knows this, obviously, because if you ARE diagnosed with ALS, SSI disability is basically automatic, with no waiting period for Medicare...because you ARE GOING TO DIE. Seriously, there is no coming back from a diagnosis of ALS...none, nada, not happening. So why isn't this public enemy #1?? I by no means want to diminish the pain and suffering of any other condition or disease, but to KNOW that there is no cure...not even a chance, no hope...that steals a lot of joy and a lot of peace, and then it kills you.
Research much, have you?
I took the time to look at some of the statistics of ALS, since that was where my “experience” was based. Men are the most likely to be diagnosed with ALS, and in fact, between the ages of 40 to 69, which admittedly is a wide range, 57% of those diagnosed with ALS are male. Those ages would lend one to think that there could be a lot of children affected by their father’s diagnosis, as well as wives or significant others, such as in my case. My husband weighed over 240 pounds when diagnosed, and although he did experience weight loss, his appetite remained strong, so he never really had “major” weight loss; this meant that I was not able to fully handle his needs, support his body weight, or eventually, do much of anything for him. It was beyond my physical capabilities. I actually sustained an injury to my left rotator cuff while trying to take him out to our patio over what was a really insignificant threshold, a drop of no more than two inches, but the rear anti-tippers hit the bricks and I was immediately in pain, angry, and sad, and of course, he was stuck in the doorway. As his condition deteriorated and he was less able to control his movements and extremities, even the Hospice company denied us the ability to have their personnel get him out of bed, for liability purposes. I can see this scenario repeating itself over and over again.
Testimonials
Sally B ~ "As a family who recently rented a “wheelchair accessible” beach house—which very disappointingly and uncomfortably was NOT accessible beyond being able to enter the home—thank you for moving forward in this gift to John-Boy, you, your children, and the many families facing the agony of ALS."
Edward T ~ "First and foremost I'm sorry for your loss. I was diagnosed in April of 2019 so your husband's passing really hits home for me.
I think this is a great idea and would definitely rent a place for a week so my kids and other family members could gather at a place that was designed for me. Your are a very strong woman to turn to such an endeavor after what I'm sure was a very stressful and emotional few years. My thoughts and prayers are that you are able to make this a reality and that in some way it brings you healing and comfort."
Toby S ~ "What a wonderful thing you are doing in honor of your husband! I'm sure he would be proud. As someone currently planning a family vacation and trying to ensure my pALS (hubby) comfort, what peace of mind staying in a place specifically designed with ALS challenges in mind would be. You are truly an angel here on earth for many families that want to safely and comfortably make family memories together! Best of luck in your new endeavor! We will definelty be checking it out!"
FAQs
Most often, the question is, "How can I donate?" There is a convenient link at the top of our page that will take you to our GoFundMe account. Feel free to share the link, as well. We also have a nonprofit Paypal account @wr.llc2021@gmail.com and you can donate via Venmo @WWishesLimited
Will John-boy's Place accept donations other than monetary? Yes! We have had amazing donations of equipment, time, labor, materials, home goods and non-perishable foods, too. We DO have a Wish List on Amazon, if you search for Windchime Wishes Limited on Amazon Smile. In addition, as we move into the rental and gifting phase, we would like to partner with community resources to provide a meal or a gift basket to families who are staying for the week.
Will there be any specific requirements to be met by families and patients who stay at John-boy's Place? Obviously, there are legal issues to address, so the short answer is yes! Each patient that will be staying at John-boy's Place will have to have a Physician's note stating the diagnosis that he or she is suffering from, and any specific limitations or co-morbidities at the time of rental. This information will only be used to facilitate the liability waiver that will need to be signed along with the rental agreement. This in no way will be used to deter or deny use of the home, but I have to be smart and protect myself and my ability to provide this amazing opportunity, right?
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Windchime Wishes Limited
Welcome! Donations can now be tax deductible, as Windchime Wishes is officially designated as a registered nonprofit 501c3 corporation!!