The #Livelifegivelife #4AJ video uses the power of the arts as a platform to support and promote organ donor registration. AJ Perrelli's mom, Christine Perrelli, the founder of The AJ Project, met a group of body painters and shared her wish to create a collaborative video using her son's gifts of life as the inspiration. The music was written and performed by John Keitel and is inspired by AJ Perrelli's actual heartbeat. The body painting was conceived and painted by Ish Peralta, Shelley Wapnaik and Hector Lopez and represents AJ gifts of life. The models are AJ's brother Michael and sister Kitty and the cinematography and editing was performed by Joseph Bearese.
The AJ Project was created in homage to AJ's passion and dedication to his life as an actor, dancer, singer and stage performer. They strive to create opportunities to support the artistic community and through the collaborative efforts of many, created this video commemorating AJ’s final role, as an organ donor.
By clicking on the link above you can register as an organ and tissue donor on this national site. There is a link to let The AJ Project know how many people have registered through our site. Even if you are already registered we encourage you to sign up on this site. They built a database that lets you use your social platforms (Facebook, Twitter, and Instagram) to TELL THE WORLD YOU SUPPORT ORGAN DONATION USING SPECIFIC HASHTAGS. Plus, they store that information and provide it to your next of kin at the appropriate time so they can see your wishes in your own words. Are your registered as an organ/tissue donor.
*Video Produced by The AJ Project non profit for the arts as part of their Create from the Heart series. The AJ Project is a 501(c)3 founded by AJ's mom Christine Perrelli and friend Christina Neubrand. Their mission is to honor AJ's legacy by creating, curating and cultivating emerging artist. This is the second video in the series. To watch the first click here.
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Are you a registered organ donor? We thought our son was.
In life, AJ Perrelli was an amazing person. He was a daddy to be and was well on his way making his dreams come true as an actor, dancer and multi-faceted performer. When he died in October 2013, at age 26, he was cast in his final role as an organ donor. To 5 families my son was their super star.
- 2 people gained sight
- A 58 year old Male received a Kidney and Heart
- A 55 year old Male received a Kidney & Liver
- A 60 year old Male received a Pancreas
- people all over the world registered as an organ donor for the first time
- the decision to be an organ donor created conversation among friends and families
- the arts is becoming a voice for organ donation registration
On the third day of AJ Perrelli's hospitalization it was determined that there was nothing more that could be done. The doctors knew almost immediately when they performed emergency surgery that the small brain bleed turned into extreme cranial swelling and AJ Perrelli was on his way to brain death. What started out as a hospitalization for observation from a fall was now a fatal situation. His family and friends where told that only a miracle could save him.
Hundreds of people came to the hospital and sat by his side. The waiting room was filled day and night and AJ and his family where never alone. We were told that AJ's prognosis was grave and that the machines were keeping him alive. In due time his brain would herniate and there would be no hope of any recovery. No one knew that three days later they would have to say their final goodbyes.
Injuries of the brain are the most common cause of death that leads to organ donation. In most cases the body itself and all the organs are in great shape. Due to some sort of head injury, aneurysm or stroke the brain no longer supplies the body with the signals it needs to function. This was the case for AJ.
No one really knows what happened to our son. There is no witnesses or big event that we can tell you about. What is known is that he was outside his apartment and for some reason and he fell. He had been sick with bronchitis and took Musenix and most likely dehydrated and passed out. Unreal. This professional dancer, stilt walker and cirque performer simple fell and hit his head the wrong way.
There was a small hairline fracture at the base of his skull with a small brain bleed. When found, he was crawling towards his front door was confused and his nose began to bleed. His friend called for an ambulance and within minutes, AJ was taken to the local ER. They found some blood on the brain and decided to move him to the bigger hospital in the city for observation. He stayed in the ER of the bigger hospital for hours before he was moved to the Neurology ICU. By that time his brain had swelled and an emergency surgery was performed to relieve the pressure. It was too late.
Days went by. Family and friends prayed for a miracle and the reality hit that no miracle was coming when we were approached about organ donation. Yessie Escano, this petite, soft spoken gentle woman, approached us. Her job has to be one of the hardest in the world. Here we are, in complete denial and shock and this sweet lovely lady has been tasked to ask that question. Are you willing to sign the papers and donate your sons organs?
A decision had to made by his father and I and it was not an easy one. There is no way to describe how it feels. Your world comes crashing down around you. You are in a fog and here we are asked to make this very important decision. One we knew will end our son's life. Once we agree, we know there will never be a chance for that miracle. We also knew that his heart would never stop beating and we would know the time and date of his bodily death because we chose a place and a time. That was just too much to process.
When Yessie approached me I was confused. Why was she asking us for permission? I thought AJ was a registered donor. To my surprise Yessie told me that they checked the NY registry and he was not on the list. She also told us that even if he was registered that the families have the right to refuse their loved ones wishes. It was not like a will or healthcare proxy form. Donor registration is not legally binding. According to LiveonNY, the organization that facilities organ and tissue donors in the Metropolitan NY area, they inform the families of their loved ones registration but, they would not take any actions to force the donation. Ultimately it would be mine and my husbands decision. What an awful thing to have to deal with in the midst of the worst time of your life right?
This was difficult. His dad Anthony was uncertain at first and felt that by agreeing to organ donation that the hospital would not do everything in their power to save our son. I, on the other hand, felt if his organs where kept healthy and a miracle did occur, AJ would have a better chance to recover.
We found out that the process of herniation that causes the brain death can take days. Many tests where done by different doctors to determine if AJ had any chance of any type of recovery or brain stimulation. Six days after his fall it was determined that he no longer reacted to any stimulus and he was proclaimed brain dead. His body was being kept alive by machines but his brain was dead. My son was no longer with us.
People were coming out of the woodwork. Friends of friends, friends of those friends, telling us stories of survival from comas, miracles they would say, but they did not understand. Our son was gone. Time was running out. AJ's lungs could no longer accept the machines and his organs were at risk. Our son could save some else's life. Our son could make it so another family would not feel the pain we are in right now. Our son, this loving, giving father to be, professional dancer, actor and singer, our oldest child could be a hero.
We consented. AJ would be an organ donor and for the next two days the search for recipients began. We had two more days with him. He lay in the bed, with machines keeping his organs alive, so someone else could live. Over night on his sisters 21st birthday we said our last goodbyes. On October 19, 2013 Five families received the gift of live from my son.
Months later I reached out to LONY. I had so many questions and one was:
Why didn't AJ's organ donor registration show up in the New York registry?
I knew that he and I had a conversation when he got his license in Florida when he was 18. He even showed me his license. I knew we talked about it again before he went on tour as a dancer overseas. But when I looked at his license and it wasn't there. I then looked at mine and it wasn't there either. WhY?
Here is what I think happened and is happening to a lot of people.
We moved to a new state and there is.....
- No central registry- States do not share information. If you are enrolled in one state and moved to another you have to re-register in your new state even if you had it on your previous drivers license.
- Two step Process- In New York you can register when you got your driver's license or state ID but you also have to go onto an additional website or mail a letter to make your determinations of gifts you agree to. I'm sure not a lot of people do that.
- Human error- Both AJ and I changed our licenses to our new state. Since you turn in your old license to get a new one in a new state it is on you to check that the person behind the counter actually marked you as an organ donor. Did they ask you the question? Did you fill out a new form? Since our licenses are mailed i didn't even think to look when it came.
What can be done to make registering as an organ donor easier?
I found an outstanding organization that has been changing the face of organ and tissue donor registration throughout our nation. If you look above there is a banner for Organize.org that will give you a direct link to online registration. You can register online for any state in the country. No more waiting in line for the DMV, no more second step needed and you are guaranteed that your wishes have been made known. When you sign up through the link above it will let The AJ Project know how many people have registered through our site. Even if you are already registered in your state we encourage you to sign up on this site. They built a database that lets you use your social platforms (Facebook, Twitter, and Instagram) to TELL THE WORLD YOU SUPPORT ORGAN DONATION USING SPECIFIC HASHTAGS. Plus, they store that information and provide it to your next of kin at the appropriate time so they can see your wishes in your own words. give them the information and they will make sure it gets to the proper state registry for you.
"Just open the window & Let us see your heart"
Traditional organ/tissue donor registration until now was only through your DMV or online directly on the Organdonor.gov site. Organize.org not only gives you an easier option but also gives you tools to share your decision with family and friends. This takes a burden off of the family during a very difficult time of their lives. I was blessed. Aj and I had the conversation. Have you?
Below are the links to the traditional registratrion sites. Anyway you do it just do it!!!!
- You can register at your local DMV and should also register online with your state registry to make your elections.
- You can go online and find your state registry here.