How can you be a part of the story?
Create Awareness
Just as ALS needs more awareness, John-boy's Place does, too! Feel free to copy and paste the website, www.windchimeresources.com . You never know who might need to know about it.
Facebook Presence
We have several Facebook pages that you can Like and Follow. This is another piece of the awareness goal, but if you SHARE on a Public setting, it can reach so many more people. Look for Windchime Wishes Limited and John-boy's Place, as well as The Retreat at John-boy's Place.
Sponsors
There are several sponsorship levels and opportunities, and these are integral in assuring the best experience for ALS patients and caregivers. The HOPE Sponsorship is a $2000 donation that can be made on a one time basis or recurring annually, can be named in honor of or in memory of someone, and it includes not only the FREE stay, but also basic groceries, restaurant discounts or included meals, AND the cherry on top: 24 hours of paid caregiver time that can be used in 8 or 12 hour increments, so that the familial caregiver can take some respite time. If you would like to donate just the caregiver time, you can become a Cardinal Sponsor and do so at $250/8-hour shift or $300/12 hour shift. ** Individual directed Sponsorships can be donated in the form of funding for a project or defined space that will be dedicated to a loved one and will include a plaque or sign to commemorate the project and its sponsor.
Connections
If you know of a Corporate entity that you believe would be a great partner to Windchime Wishes Limited, please provide contact information and your relationship to said entity.
Community Outreach
At Windchime Resources, we believe in serving our community and being a good neighbor. To that end, we will happily participate in community events and initiatives and look forward to sharing space and creating awareness of both ALS, John-boy's Place and local/civic events. #lovewhereyoulive
About Me
My name is Leslie Stewart Gafford, and I am an ALS Widow and mother to three amazing young adults. We live in Mobile, Alabama and work daily to figure out our new lives without our "John-boy", John Porter Gafford, who passed away on May 5, 2021, just under two years from initial diagnosis. Prior to diagnosis, John was an active father and husband, part-time musician, all around handyman and Mr. Fix-it and had worked in the Aerospace Engineering Industry for 35 years. We NEVER saw ALS coming.
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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 rental or resort markets, and the lack thereof can be dangerous for both patient and caregiver. 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 changing physical abilities and 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, John-boy's Place officially welcomed its first ALS family in March of 2023. It was a beautiful and faithful family made up of husband and wife (pALS) and their twin 9yr old daughters. More than once before they actually made the trip, Alicia let me know that having this vacation scheduled was giving her the hope and strength to face continued progression of her ALS. She felt it gave her "something to look forward to". They were so happy to have made the trip that they scheduled a return for July of 2023, but as ALS does, it changed the picture and Alicia passed away on August 5, 2023, without making it back to Andalusia. Over the long months of working out details and modifications to the house and grounds, 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 obviously knows this, because if you ARE diagnosed with ALS, approval of SSI disability is automatic, with no waiting period for Medicare...at least one piece of official recognition of the fact that ALS still has NO CURE. So why isn't ALS public enemy #1? I by no means want to diminish the pain and suffering of any other condition or disease, but to KNOW that you have been diagnosed with a disease that at this time, will kill you, either sooner or later...it steals a lot of joy and a lot of peace from everyone in a patient's circle. This is not a solo disease.
Research much, have you?
There are a lot of very telling statistics surrounding ALS, but to date, very few answers. ALS (otherwise known as Lou Gehrig’s disease) is always fatal and patients typically live for 2 to 5 years after diagnosis. U.S. Military veterans are twice as likely to develop ALS as non-veterans, both male and female. 1 in 300 people will receive an ALS diagnosis in their lifetime. According to research, ALS can affect anyone, anywhere, at any age, with no racial, ethnic or socioeconomic boundaries. The majority of ALS cases (90-95%) have no family history of the disease - this is termed Sporadic ALS. It occurs most frequently between 40-70 years of age, but can affect people even younger. There is an alter ego ALS termed Familial or fALS. Familial ALS is when there is a family history of having ALS and it is passed down through generations. It accounts for about 10% of all cases of ALS. So far there are over 30 different genes that have been identified to have an association with ALS.
Every 90 minutes, someone is diagnosed with ALS, and someone passes away from ALS. Men are 20% more likely to be diagnosed with ALS than women. Takeaway: It could happen to YOU or a loved one in your family group.
I have been fortunate to become involved with a couple of the major players in ALS research and perhaps as important, ALS Legislation and Funding. It's never going to be just one or the other. WE NEED research, clinical trials, drug development, Congressional awareness and support, and above all else, we need to increase the funding that is available for ALL of the above. You can read more information and get involved with ALS Therapy Development Institute (ALSTDI) by visiting www.als.net or I AM ALS at www.iamals.org . Both organizations are nonprofits that are working daily to change the way ALS is diagnosed, treated and funded, and one day, there WILL be a cure.
Testimonials
Beverly: Public review October 2023
We enjoyed our family time at John Boy’s Place. All the amenities needed for my husband who has ALS were there. He said he felt safe in the hoyer lift, shower chair (which is the Cadillac of shower chairs), and the elevator lift was wonderful. He could move around in and outside the house very easily which was great to keep up with the family. Our adult kids enjoyed the ping pong, air hockey and corn hole games. Our one year old Granddaughter enjoyed the toys and books available to her. Working with Leslie was easy and always informative. The house is very well stocked with anything you might need. We hope to have the chance to go back one day. To Leslie: Your house is perfect for ALS needs. There is no way we could go anywhere and take all the needed equipment. The house is the best stocked of any AirBnB or VRBO we have ever stayed at. Thank you for your hard work to make time away possible for families like ours.
Julia: Public review July 2023
Leslie is an absolute amazing hostess, John boys place is the epitome of home, totally accessible for wheelchair use, and she has done a fantastic job at making sure this is set up for any handicapped situation! we drove from Michigan with my dad who has a TBI, we definitely plan on coming back!
Dana: Public review June 2023
My husband is a paraplegic and this place was perfect for him and for our family. We will definitely book again in the near future. Thank you for allowing my family to stay in your home. We loved sitting on the wrap around porch, and the dock area. I hasn’t played air hockey and ping pong in some years and this weekend, playing those games brought back a lot of good memories. Although my husband didn’t catch any fish, he was happy to be somewhere that was wheelchair accessible. Thank you again!
Connie: Public review April 2023
John-boys Place was exactly what I hoped it would be. We were able to relax like we discussed before arriving. The home was comfortable and had all the accommodations we needed and then some! We enjoyed our stay and can not wait til we can return and bring the family with us. Thank you again Leslie!
Alicia: Message March 2023
Leslie, I don't even have the words to thank you for your beautiful dream you had and created john boys. We needed rest and peace and time to enjoy the little things and we found it there. It was everything I dreamed the last 22 months and more. We want to come back. It was literally my dream come true and I'm so glad we can come again. Gives me something to look forward to. *At the time of this message, Alicia was only able to communicate through her Tobi, a wonderful piece of equipment allowing ALS patients to communicate using their eyes. Unfortunately, Alicia passed away before she and her family were able to return.
Orion: Public review February 2023
This is a hidden gem!! Perfect for small family gatherings, with lots to do on the property. I will stay here every time I visit the area, if it’s available. Thank you for allowing us to stay at your place. My Mom absolutely loves the property and your story. She is working on setting up donations to sponsor a family stay there. We will be in touch to see how we can help your cause.
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 as well as Venmo for nonprofits, @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. In addition, as we are now 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. These types of donations can be made with the help of Leslie Gafford and virtual funding tools.
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 fill out an application, to include date of birth, date of onset and approximate accessibility needs at time of stay. This information will only be used to facilitate understanding of a patient's abilities and needs, but in no way will be used to deter or deny use of the home.
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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!!