Ava Kaufman, has the heart of a 17 year old boy. Here’s what she has to share about here journey.
Nine 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.
As you can see my story was quite dramatic; many are. 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.
Since 2012 Ava’s Heart has assisted over 200 families on their transplant journey. Usually with the needed mandatory three months of post- transplant housing. This year we have fulfilled a dream to have our very own Ava’s House. I am very proud of what we have accomplished and there is so much more to be done.
Last year we began our donor assistant program. For me the circle was just not complete, There is no story without the donor. We here all these amazing stories on transplant, on donor families and transplant families meeting, listening to heart beats. Many lives saved.
It is against the law to pay for organs. I am in full agreement with that concept. The organ procurement organizations like One Legacy offer amazing services to these families. Grief counseling, the famous run walk and the one Legacy/Donate Life float in the rose parade.
WHAT ABOUT THE HEROES THEMSELVES. The donors, who save lives every day, who create jobs and financial gain for every company having to do with transplantation. The drug companies that make millions keeping transplant patients alive, the hospitals, the doctors the mechanical device companies.
In the last year Ava’s Heart was fortunate to receive a 50k grant from a lovely woman who wanted to help theses families. She heard me speak of a single mother of 4 whose husband had dies and left her alone with 4 children. Her eldest son 17 was the first to go to college. He lived in downtown LA and was in the wrong place at the wrong time. Shot, by a drive by shooter. He by choice had been an organ donor. He saved over 8 lives that day. His mom called me hysterical, could we please help her cremate her son. Imagine that a hero, saving lives and she had place to go for financial assistance.
Since March we have paid for over 40 cremations. Now we are out of funds, the requests keep coming in. There are no grants to apply for, there are no non -profits doing this as it seems people don’t want to give money to dead people. However, these people are saving lives, a donor saved mine and I am passing it forward the best way I can. I am emotionally saddened daily by the requests to help cremate, a son, a daughter, a brother, a sister, a mother, a father, a friend. I want to scream from the roof tops that these families need assistance at the most emotionally devastating time of their lives.
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.
Thank you for your time and consideration. From my new heart to yours, Ava Kaufman
Ava Kaufman Has the Heart of a 17 Year Old Boy was written by Ava Kaufman founder of Ava’s Heart.
For more articles celebrating charities champions like Ava Kaufman visit here: Lisa Palanca Says, “We Must Hold Teachers in High Esteem”