I’m writing to introduce you to an amazing young man who will change the way you look at the world. Jacob Kilby is a young, 19 year old local San Diego surfer who is facing a major health challenge. You often hear about many children and adults that are battling cancer or diabetes, but congenital heart defects seem to be few and far between. Heart disease is a major problem for both the new, young, and mature people of the world. Many times when you do hear about unhealthy hearts it’s in reference to a person who has lived many years and perhaps did not treat their heart as good as they should of. Those stories that start with a newborn baby who will have his first open heart surgery at the age of 5 days old are not plastered all over the media. I want to make a difference for the San Diego community and possibly beyond, by educating and promoting organ donation awareness through the story of Jacob Kilby’s heart.
Jacob was born with Hypoplastic Left Heart Syndrome where the left side of his heart did not fully develop. This is a rare condition that is one of those congenital diseases that we don’t know how or why develops in a certain fetus. We can’t blame it on how a woman treated her body or what she did or did not eat while pregnant. It’s an unfortunate circumstance that happens and Jacob was born on Sept. 8 1995 with this disease. He was born strong and ready to take on the four open heart surgery attempts at fixing his heart, all of which failed. Jacob was very lucky to receive a life-saving heart transplant in 1998 that saved him just in the nick of time.
Jacob has lived a wonderful life. He was able to do almost anything any other boy his age could. Despite the daily doses of anti-rejection meds and the numerous doctor visits, Jacob sailed through school and was liked by everyone. His family adores him and treasures him as if he were a diamond. His smile shines so bright that he truly must be a treasure. So, the news of his need for a new heart came as a devastating shock to all of us, including him just a few months ago.
As the days have passed, I have learned a great deal about the world of organ transplantation I learned that Jacob is on the wait list at a stage “2” where he really has no chance of getting a new heart. Those who receive organs are those who are on the list the longest and those who are the sickest. So, I guess things haven’t changed in that respect in the 17 years that he’s had his donor heart. His family watched his frail little body diminish and lose oxygen right before our eyes. And here we are again.
The amount of organs available for transplant is not even closely comparable to the amount of people on the wait list in need of an organ. There are currently 123,000 people nation-wide on the national organ transplant wait list. Eight people die every day waiting for an organ that will never come. Millions of families wait in agony every day, never knowing if their loved one even has a future. There are no guarantees. There are no promises. There are no words to use as comfort. There are not enough organ donors out there to save these “wait listed” people. There just isn’t enough education and organ donation awareness out there to make people think about signing up and giving the gift of life. People don’t even think about it until they are in mourning over the loss of a loved one and the question gets asked.
Please help us change the way the world makes organ donation decisions. If we educate and show the real faces of people on the wait list, people might take the time to think about donating before the decision is made for them after they are gone. Please join my campaign in promoting organ donation awareness through Jacob’s story and hopefully we can save some lives. One person can save 8 people in different ways with their donation. That fact just may be convincing enough.
Thank you for your time. Please take a look at Jacob’s story and all of the promoting he has worked towards in the San Diego community. He takes part in many fundraising activities, where organ donation awareness is always his main objective. We would love some assistance with Jacob’s heart and these are some of the ways you could help!
1. Sign up to become an organ donor and save another family from having to go through this tragic experience. www.organdonor.gov
2. Donate an item, or items totaling at least $50 for a silent auction that will be held in November.
3. Go to Jacob’s fundraising website and support him in hugs or monetary donations.
Giveforward.com Jacob’s Heart –Live your life today!!!
You may also send any donations through the mail at the following address:
Jacob’s Heart OR Jacob’s Heart
2211 Pacific Beach Dr. PO Box #905
San Diego, CA 92109 Jamul, CA 91935
Please feel free to share this request with anyone and everyone you come into contact with. If we all signed up to be organ donors, Jacob just might have a future.
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.
I like most transplant recipients I would imagine wake up every day and thank their donor family. How utterly amazing that someones sorrow can create life for another human being. Ten years ago there were not half as many of us as there are now.
With advances in modern medication, recipients are living longer lives and with artificial hearts and Vads many who would have died are able to be kept alive waiting for that life saving heart. it is strange to think while you are waiting for an organ that someone else has to die . So those of us walking around with someone else’s DNA being kept alive by medication that surprises our immune system to trick our body not to reject this beautiful gift.
I have decided that we are really THE OTHERS. A group of amazing miracles walking around on earth , showing all of those around what truly is important, we are teachers, hopefully in some small way passing it forward. Some souls are stars. To all of you special others out there. Come from gratitude , pass it forward, be of service and take the leap——the net will be there.
In loving memory of those who could not afford to live
to honor those donor families who have give the gift of life. to help those that have been given the gift of life have a better quality of life
Now we need your help
Text avasheart to 41444 on ur phone —make a small pledge. If everyone gives ten dollars and they ask their friends to give ten dollars—so many lives saved. without housing post transplant you can’t get on the list without good dental hygiene you can’t get on the list——
Thank you —from avasheart. Bringing awareness to the many obstacles transplant patients face.
Today I went to order my anti-rejection medication along with other various vitamins and minerals. I try very hard to stay on top of refills and usually order a week or ten days in advance. Just to make sure I do not run out. One never knows when mother nature might decide to shake the earth or cause a flood or fire or any other so called acts of god. It is of the utmost importance to take ones meds 12 hours apart every day. So today when I called the pharmacy I was shocked to discover that medicare has passed a new law. No one can order their anti-rejection medication more than five days out of running out. the pharmacy also revealed that this new so called rule makes so much extra paperwork for the pharmacy. It makes no sense. The only people on these drugs are transplant patients, it just makes absolute no sense. It creates stress on the providers and the patient. it was comforting to me to know that I would never run the risk of running out of my meds. Its bad enough that these life saving drugs have their own side effects , the worse being not taking them of course. No one said life was fair or that it even makes sense. This law for sure does not.
Meet Taylor and her mom Susan. Taylor is 19 and on her second kidney. She received her first kidney from her mom when she was a baby. I am not sure when she received her second one. It was not a perfect match but by taking her medication and treatments weekly and monthly she has managed to get herself to College at Santa Monica College. She wants to be an actress and does extra work to help pay the bills. However a few months ago Taylor’s mom Susan lost her job. She is a college graduate and has been trying to get work. Just last week Avasheart received an application for aid. Susan was unable to pay her co pay of 160.00 a month for her life saving medication. We paid the co pay. She received her meds and UCLA did not charge for the treatment. I was shocked to discover that over 60% of all pediatric patients at UCLA are transplants. The need for housing and a Ronald McDonald House for transplants is a problem that both Cedar Sinai and UCLA patients face. However that is an entire other story. Taylor and her mom are months behind in their rent and will be evicted this coming week. Avasheart does not have the three months rent they need 3600.00. I am reaching out to everyone to make a small tax deductible donation to Avasheart — side mark Taylor if that’s where you want it to go. A few hours ago I received a text from Susan that Taylor is in the hospital. Her blood pressure is very high and she can not breath. The stress and fear of being homeless has just become too much for this sweet girl. I was with them a few days ago and Susan is not able to hide her fear from her daughter. Please pray for Taylor and if u can help , please do.
I think I want to start this heart felt thank you with “Ahhhhhhhhh”.
Well, here I am right out of the shower. Put that way doesn’t seem like much, but let me give you a little back ground. It is my first shower and change of clothes in days. I have spent all of May and half of June sleeping in a hospital room. Dan got his heart and liver transplants the first of December, and we have had family with him everyday since. (more…)
I am in competition with no one . I run my own race . I have no desire to play the game of being better than anyone in anyway shape or form . I just aim to improve , to be better than I was before. Thats me and I’m free.
My life took quick and dramatic turns after the diagnosis of congestive heart failure. I moved from a scenic, culturally rich environment in New Mexico back to So. California where I grew up. I needed the support my Mother and brother could provide, and access to good health care. I left a job and friends I loved, the excitement of living on a 21,000 acre Ranch in Georgia O’Keeffe country where the sky was wide open, to come to congested So. Cal. and live with my Mom and my Stepfather, who had Alzheimer’s Disease. (more…)
OneLegacy just released its annual performance press release about the company’s role in saving lives and we want to share it with you. We are sure you’ve played an important part in many of the accomplishments achieved and we thank you. A special thank you to our African American Ambassadors for all they do in their communities. In 2012 the organ consent rate among African Americans reached an historical high of 70%. (more…)