Dear Mrs. Obama,
My name is Ava Kaufman, and I am writing this to you as a mother a heart transplant surviver and advocate for those that have been blessed with the gift of life. If not for the love of my , at that time , 11 year old daughter Jade and the fact that I had been a professional dancer I would not be here asking for your assistance.
I had this entire letter planned out and now one phone call from a mom in Las Vegas is taking me out of my format and into my heart where it all happens anyway. The life saving call came last night from the mother of a 23 year old girl who is lying in the ICU at UCLA Medical Center in Los Angeles waiting for her life saving organ, in this case a liver. She too is a mom of a six month old baby girl who she will not be able to watch grow up unless she can prove that she has three months of housing post transplant. She and her family are of modest means and can not afford to pay their bills at home and the expense of housing near UCLA. I received the call because i run a very small. but growing 501 3 C called Avasheart. We provide resources and refuge for those given the gift of life. We are bringing awareness to the fact that anyone at any time can be in need of a life saving organ, that any healthy couple can give birth to a child needing an organ and to the major problems transplant patients pre and post transplant face.Unless your life has been touched by transplant you can not even image the life long challenges. So getting back to our young mom. My foundation has been able to help ten families this year , most of them with housing . However at this moment I do not have the funds to help this family. If housing can not be negotiated, she will die and her child will never know her and her mom will lose her daughter.
i had an auto immune disease five years ago that went misdiagnosed for three months. Weeks after that i ended up at Cedars Sinai Medical Center being kept alive by machines., given days to live. I was put on the list as an experiment never expected to live because no one had ever seen this disease destroy a heart. In a series of events that can only be described as miracles i received the heart of a 17 year old boy in ten days on my birthday. I was in the hospital for four months and was told I might not walk again. I am dancing. again. It took me two years to come back to me. Like I said miracles and love , the strongest love there is , the love of a mother for her child. I lost everything, my home my marriage , my fortune. I went from living in a 2 million dollar home to disability of $1500.00. I then discovered that if i go back to work and earn over $2000.00 a month my medication benefits get cut. ( they cost $3000.00 monthly) So I will then have a co pay of $1500.00 a month. After volunteering at Cedars I began to truly understand the various difficulties transplant patients face. Aside from the financial there is the emotional. Someone did have to die for us to live. i thank my donor family everyday.
Two years ago with the small savings I had left i started avasheart.org. please take the time and go to our website and you will get a much better understanding of the situation.
It is truly wonderful what your husbands administration has done for health care. yes everyone should have health insurance. Here comes the tricky part that comes with transplant, you need to be able to afford housing very near your transplant center or you can not get put on the list. You need to have a clean dental bill of health, otherwise ur teeth get pulled. So once again if you can afford housing which is vital you can get an organ. if not you die.
Here in Southern California we have the leading transplant centers in the world. Cedars Sinai and UCLA Medical Center. People come from all over the country to these facilities. They house the only places in the country where u can get treated for anti body problems, rejection and that has the artificial heart.
While there are great organizations , such as Donate Life. that deal with the issue of organ donation, and while of course we advocate that, we are dealing personally with the actual families of transplant and their specific needs. While my story is amazing, there are so may stories that will touch your heart and make question how we as a nation can have the most advanced ways to save lives, the best mechanical devices to prolong life before an organ is found but do not think about what happens to these people after their lives are saved. Most have been through financial disaster and emotional turmoil. Think about it. What do you tell your child who is waiting for a life saving organ knowing someone else must die in order for them to live.
Mrs Obama, I would like to meet with you, i will come to you. I need your help to bring awareness to this new and growing field. We would love for you to learn about what we do, then write about it and talk about it , endorse our work and introduce us to Oprah. I hope that made you laugh.
One quick note. Right before I died i was starting a new business which began as Twist, shape your life, be urself with a twist , to Keep Moving. it was a child and teen obesity program to promote healthy eating and five minute workout routines etc. We were off to a great start, I became ill and then miracles o all miracles you took over. I thank you for that.
Please go the site , read through , look at the sweet innocent children we have helped , read the notes from young and old and see how far reaching the impact is on each transplant family and communities.
Thank you for your time.
From my new heart to yours,