Today we’d like to introduce you to Ava Kaufman.
Thanks for sharing your story with us Ava. So, let’s start at the beginning and we can move on from there.
I have the heart of a 35 year woman. Six years ago I was a perfectly healthy businesswoman and mother, and in great shape. I’d been a jazz dancer for Gloria Gaynor, dancing for years around the globe. I still took class, and was strong and fit. Until I wasn’t.
What started as a simple rash was actually a rare auto-immune disease. The disease I had is called Dermatomyositis. It is a connective-tissue disease that destroys muscles. Frequently affecting the skin and muscles, it is a systemic disorder that can also affect the joints, esophagus, lungs, and heart. It went misdiagnosed, and continued advancing, so that in short order it destroyed all of my well-honed dancer’s muscles. For three months I had visited the dermatologist complaining of itching on my fingers, back, eyelids and shins. No blood tests were taken, which likely would have offered a proper diagnosis.
During the last two weeks of those three months, I went from being a ‘super woman’ to needing a walker, I went from 105 lbs. to 200 lbs., and finally, my body just gave out and shut down. I was on my way to a doctor’s appointment when I fell down, unconscious, was rushed to the hospital and within hours put on life support – an ECMO machine, an LVAD, and a pump. My illness had come on so quickly that there wasn’t time to prepare for anything. I have one vague memory of being taken to the hospital, and then I have no memory of my 11 year old daughter, my family and friends; nothing.
The heart is a muscle, and the disease had destroyed my heart. The only thing that would keep me alive was a new one. In what can only be described as a series of miracles, the transplant team at Cedars Sinai Medical Center decided to give me a chance and put me on the list. They knew it was a long shot that I might live. In fact, many never believed I would live long enough to get a new heart, much less live through the ordeal, or ever walk again. It was a total experiment.
A special thank you to my donor family.
Some things in life are just meant to be. In ten days, on my real birthday, I received a new heart. For two months I lay in an induced coma. The first time I opened my eyes and heard I’d had a heart transplant, I thought they were joking; there was no way. How could that be possible? Until then, transplant had been a dot on my driver’s license. I’d never really thought about it. I had certainly never actually considered the idea of someone’s death being able to give life, causing grief and happiness in the very second that it occurs.
At some point in the hospital post-surgery, I could not move at all. I was trapped in my own body, a childhood fear realized. Being unable to move, I was truly ready to let go. In the midst of my coma, I had felt as though I was sitting in the middle of the palms of two large hands, sure they belonged to God. But I couldn’t leave my child behind. Nor did I want to survive if it meant being unable to play with her. So it was there at that moment that I made a promise. If I could get back to being my daughter’s mom again and to being able to dance again, I would spend the rest of my life giving back.
After volunteering in the transplant centers, I began to observe significant gaps in available post-transplant services. Thus I began Ava’s Heart.
I was fortunate enough at the time to have great insurance and to live near an amazing transplant center. I left the hospital in four months in a wheelchair, my money embezzled by business partners, newly divorced and almost broke. But I had my child and I had my life.
Never give up, create huge dreams and make them come true. Out of my transplant journey came Ava’s Heart. What started out as a promise to God has turned into an organization that is focused on helping families and recipients on their personal transplant journeys.
And I am grateful, every day.
Has it been a smooth road?
No it has not. It has been the most incredible and the most difficult thing I have ever done. Someone said to me when I started Ava’s Heart, that it is probably better that you don’t know what this entails, because if you did, you probably wouldn’t do it. I wanted to give back so much and was so grateful for the gift of life that in the beginning I was naive in believing that it would be easy because there is so much money here. I thought it would be much easier to get donations and grant money. It’s taken me a while to learn how to navigate the non-profit world, but I’m learning. There is a great need for the work we are doing, and I truly believe I’m on mission from God. I met the most incredible people on this journey and I am humbled every day by all of them.
We’d love to hear more about your business.
The mission of Ava’s Heart is to provide resources and case management support services to transplant patients and donor families, who would otherwise likely not be able to access the needed treatments and care. Integral to our mission is to raise awareness and to educate the public about the challenges transplant patients face, both pre and post-transplant, and to promote organ donation. Transplantation not only affects the recipient, but the entire family. We are known for helping transplant patients with post-transplant housing, which is a requirement for getting listed. For example if you live in Bakersfield or Las Vegas and are in need of special antibody treatments or an artificial heart, you need to come to Los Angeles where we have the best transplant centers. If you do not have the financial means to pay for post-transplant housing you cannot get listed. Ava’s Heart does provide a wide array of resources and refuge, while continuing to bring awareness in promoting organ donation. We are proud that we are pioneering a very new field and in such a short period of time have helped save many lives. In 2015 we won Most Achievement by a Non-Profit from the Association of Fundraising Professionals. We are fortunate to be a partner with Change a Life Foundation who has enabled us to assist many families that we have helped. In 2016 they awarded us with The Best Partner Award and we held our first Ava’s Heart Heroes Ball where we honored those that have helped us in our mission and who enhance the world of transplant and organ donation. What sets us apart is that we are the only foundation that helps all transplant patients and donor families. We are on the fast track to becoming the go-to foundation.
Is our city a good place to do what you do?
Los Angeles is the perfect place for our business due to the fact that we have some of the best transplant centers in the world. People come from all over the U.S. to be transplanted, because of the advanced technology we have here. Los Angeles is a wonderful place to start a business. As a non-profit organization with some of the largest philanthropists in the world with the best medical centers, one would assume that we would have a ‘Healing House’ at reasonable rates to house transplant patients post-transplant, since it is a requirement for care. For example in Philadelphia and Orlando, there have healing houses for their transplant patients. When I approached the CEO of one of our premier hospitals about this, he said, “We are not in the hotel business”, yet housing is a mandate to get listed.
- Address: 9461 Charleville Blvd
Beverly Hills CA 90212
- Website: www.avasheart.org
- Phone: 3107796616
- Email: firstname.lastname@example.org
all in house