Who Are We
Rylan William Waller
Rylan was our grandson. He was a beautiful boy, and we loved him very much. It took us a few months before we discovered that he had been born with severe disabilities that would require him to be confined to a wheelchair and would require around-the-clock care for his entire life. We never knew for sure what happened, but it appears he suffered a stroke in utero that caused permanent, irreversible brain damage.
Despite these disabilities, however, he was a happy boy with a great personality who brought joy to many people. He loved music, and he would literally jump with joy every time he heard the first few notes of a Taylor Swift song or when he heard the voice of one of his favorite people.
Like any boy he could be obstinate or stubborn when he did not want to do something, but most of the time he had the sweetest disposition you have ever seen. Although he would get tired, he was always up for a trip to meet his family, friends and caregivers. We have some great pictures of him that really do capture the way he was.
Our favorite memory of him are the times late at night when he was a little baby, and we would hold him in our arms after he had woken up from a bad dream. He would lay on our chest with his eyes open while we sat in a big recliner, listening to our heartbeat or listening to us while we hummed a little song or talked to him about what we planned to do the next day. He would eventually fall back to sleep, and we could put him back in his crib.
In the end, Rylan taught us how precious life is and that no matter what limitations a person might have, their life can have a positive impact on the people around them. We would have never understood this the way we do now if we had not had Rylan in our lives.
This does not mean that raising Rylan was easy or that many people – especially his fulltime caregiver, Melinda O’Neill – made many sacrifices to make sure he had the best life possible. It was hard, but it also opened our eyes to the sacrifices that family members around the world make every day to care for someone they love. Like us, they did not volunteer for this responsibility; but they stepped up when they had to; and because they did, someone’s life has been made better.
Although COVID took Rylan from us, we established a Donor Advised Fund at The Denver Foundation to: (1) assist those non-profit organizations that already provide meaningful assistance to these caregivers, and (2) support data driven research that will lead to the development of more effective ways to support these caregivers. These programs not only include traditional programs such as respite care, but also new programs that more effectively incorporate these “volunteer” caregivers into the medical team that are part of any disabled person’s life, including programs that give them the respect and recognition they deserve for the knowledge and experience they have acquired as fulltime and parttime caregivers. We call this Donor Advised Fund “Rylan’s Gift”.
Donations to Rylan’s Gift are 100% tax deductible, and 100% of the donations goes directly to the programs described above. No money goes to administrative expenses associated with the operation of Rylan’s Gift.
For more information about Rylan’s Gift, you may contact us here. Donations can be made to The Denver Foundation at 1009 Grant Street, Denver, CO 80203 with instructions to contribute the donation to the Donor Advised Fund denominated as “Rylan’s Gift”. The phone number for The Denver Foundation is (303) 300-1790.
Meet the Founders & Advisory Board
“Rylan’s Gift” is a Donor Advised Fund at The Denver Foundation, created by Karen and Bill Waller, Rylan’s paternal grandparents. Contributions to it are 100% tax deductible in the year they are made.
Each year, usually in the fall, the Rylan’s Gift Advisory Board recommends gifts to organizations that support unpaid, volunteer caregivers, usually family members. Karen, Bill and Rylan’s aunt, Leslie, currently serve on the Advisory Board.
The Rylan’s Gift Donor Advised Fund does not make gifts to or otherwise support professional caregivers and/or their organizations.
We do not want to create a large organization that provides services to the caregivers. Instead, we want to support organizations like the Mayo Clinic and Easter Seals that already do so.
Bill Waller
Co-founder
Grandfather
Karen Waller
Co-founder
Grandmother
Leslie Waller Strong
Board Member
Aunt
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Thoughts About Caregiving
During our years with Rylan, we learned that most “caregivers” are just normal people who are forced to “step into the breech” when something happens to a loved one – a debilitating illness, an accident, etc. One morning they wake up living their normal life, and later that day something happens that changes the rest of their life. They did not train for this job; and they for sure did not volunteer for it, but they are the people who step up when someone has to out of a sense of responsibility or love.
In our experience, the caregiver is usually in the background because the person needing care is usually the center of attention. The caregiver is a person like the “butler” who makes sure everything goes perfectly without being seen. This is very hard work, and they are never really “off duty”. Even when they are on vacation or somewhere by themselves – a rarity – they are constantly worrying about the patient. Are they getting their meds; are they getting their baths, etc.?
The caregivers also get very little respect from many professionals, including many doctors and nurses, who think they are a “distraction”. In reality, these caregivers often become experts in the illnesses their loved ones have, and they are a critical part of the care team. The way they perform their job can have a big impact on the patient’s success. The main reason Rylan lived as long as he did is because of the tremendous care he received from his volunteer, unpaid caregivers.