Where do I begin? How do I express in mere words the gratitude that Vivian and I feel for the many sponsors and supporters who turned out for the #ShowVivLove event at The Sacred Space in Wynwood?
We simply cannot say thank you enough for everyone who made the event possible and who donated for Vivian’s ongoing care as we search urgently for a living kidney donor.
My goal for the evening was to educate and motivate – to create excitement and raise awareness regarding living kidney donation. The speakers absolutely surpassed all of my expectations and hopes. Joining us were:
– Ari Sytner, author of the book The Kidney Donor’s Journey: 100 Questions I Asked Before Donating My Kidney.
– Alina Villasante, creator of Peace Love World Clothing.
– Vivian Fried herself, who shared from her heart about this difficult journey.
At this point, Vivian and I are completely transparent about the path we are walking and the help we need to keep putting one foot in front of the other.
I began the evening by telling everyone how I start each day checking response to the Facebook ads I’m running in search of a donor. Those ads have reached more than 250,000 people and have been shared 3,200 times. More than 50 volunteers have stepped up to be tested as donors.
To date, not one has successfully completed the process.
For everybody who thinks this may be easy, it’s not. It’s very difficult to find somebody who’s willing to give the gift of life.
Vivian has been on dialysis six days a week for more than three years. She hasn’t missed one scheduled treatment. Not one – because she wants her body to be ready when a kidney becomes available.
But the process is taking it’s toll. The access point for the dialysis needle, which took seven surgeries to establish, is wearing out. And more physical and cognitive issues are starting to appear.
I’ve been tested several times. I can’t donate because I’m pre-diabetic. In fact, your health has to be nearly perfect to donate a kidney.
Ari told the audience that the decision to become a living kidney donor was a private journey. It’s a process. You realize that there are people around us who suffer every day.
“I’m honored and humbled to be a part of this evening. To be able to sit next to this incredibly beautiful woman, inside and out, and to have the opportunity to be so inspired,” he said.
When you know somebody who has cancer, Ari said, there isn’t much you can do except cheer them on in their battle. But with kidney disease, you can actually do something tangible to help.
“This isn’t like every other disease. I can do something about this. I have the cure. I have the solution,” he said.
“For me, the decision to donate a kidney was not to donate a kidney. It was to ask, ‘What can I do to look at the pain of another person? To let them know that they’re not alone. That someone, even a total stranger, can come into their life and share love, and share support, and prayers, and good thoughts. And to let them know that we’re here for you in whatever way we can be helpful.'”
Ari said the alternative to giving a kidney is like a person standing on the side of a swimming pool and holding onto a life preserver – just in case – instead of throwing it to a drowning person.
The decision to donate, Ari said, involves a struggle with what it means fundamentally to be a human being.
“For me, I recognized that I was holding this life preserver – and it meant the difference between life and death for one person in the universe,” he said.
As she struggles, Vivian takes comfort in things that you and I might take for granted – like the aesthetic beauty in Alina’s line of clothing and accessories.
Vivian first met Alina about three years ago during a crowded warehouse sale in South Florida. She asked one of Alina’s associates if there was a chance she could meet the designer, who immediately had empathy for Vivian’s plight. She generously gave Vivian a number of her favorite items from the catalog – and her cell number.
Friends ever since.
“This is a women who everyone is dying to meet. Thousands of people are there. You can’t event get into the warehouse because of the lines. And, yet, she was amazing,” Vivian said, adding that she now calls Alina “princesa” – which is Spanish for princess.
“Many times, when somebody is going through something like Vivian’s going through, they’re teaching you something,” Alina said.
“I’m not teaching Vivian anything. Vivian is teaching me about humanity. Vivian is teaching me about loving everyone. About how everyone matters, and how we are all one. All of those things that I preach in my fashion brand, they’re real. They’re real stories about real people.”
As you might imagine, our expenses have gone up enormously since the start of Vivian’s ordeal.
Insurance costs $1,000 per month, with additional expenses running another $2,000 to $3,000. That’s in addition to expenses for home care and food. Vivian eats a perfect renal diet so that her body, again, will be ready when a kidney becomes available.
And then there’s the cost of ongoing Facebook ads. You get the picture. This is expensive.
That said, we are eternally grateful for the sponsors, donors and colleagues who are helping us through this financial wilderness.
Some of those who #ShowVivLove include:
- Venue Sponsor – The Sacred Space Miami
- Event Sponsor – Karla Conceptual Events Experience
- Media Partner – Salem Communications and 880 AM
- Platinum Sponsors – The Butters Group, Certus Senior Living
- Gold Sponsors – Warren Henry Auto Group
- Sapphire Sponsor – Plaza Equity Partners
- Bronze Sponsor – Gil Dezer
- Supporting Sponsor – Scott and Debbie Robbins; Collarmele Partners, Ron and Lauren Book, Maury L. Carter & Associates, Inc., Brandon Land Development, Rivergate Companies, Koniver Stern Group, Aria Development Group, Meland Russin Budwick, BoardRoom PR, Grouper Financial, Levy Public Relations & Events, Gene Berman
- Hair and Make Up Provided by – Dafne Evangelista Beauty Lounge
- Beer Sponsor – The Tank Brewing Co.
As you can see, everyone that’s in my life and in Vivian’s life is part of an amazing ecosystem of support.
To find out if you can be a kidney donor, email R1125@renewal.org.
Ari said he believes the bond that has developed between himself and the recipient of his kidney and her family is nothing short of magical.
“Not a day goes by where I don’t feel like I got the better end of the deal. My life is so incredibly enriched by what I was able to give to another person,” he said.
Click here to listen to the entire #ShowVivLove event. The question and answer session is not to be missed.