Meet Julien Collot a young kid with the heart of a Lion, the courage of an Army and the spirit of an Ancient Sage:

Julien was your average happy three year old child, quite adventurous, very engaging, he managed to focus on each person as if they were the only one in the room. With an American mother and French father, Julien was bi-lingual at 13 months and learned to be not only the translator, but often the “peace maker”.

Juliens happy childhood was cut short in March of 2006 when after several weeks on antibiotics, a few trips to the emergency room and seeing his pediatrician more frequently than his friends- I finally “knew” instinctively that something was seriously wrong. His heart was slamming so hard against his chest that it moved my hand away from his body.

It was time to go to the emergency room again, and to insist that someone “humor me” and run some tests. Little did I know that they next few hours would change my life forever. By the time we got to the hospital my sons heart has slowed down considerably, but he still didn’t look right. I knew that I was over-reacting but asked that the doctor see us right away- “a feeling” I had. I explained that although Juliens heart beat seemed normal to me now, that it was really out of control earlier. When they hooked him up to the machines it registered at 257 beats per minute. What did I know, again, I apologized for over reacting, but it was SO MUCH FASTER in my home? They looked at me as if I were from another planet. I still had no clue. I explained that I didn’t want to wait in the ER for hours, it was pretty crowded, again, “that feeling” I had, I really wanted to keep Julien away from other sick people. The doctor made a call and took us right in, “the fast track” he called it, I thought, how lucky I was, this doctor must really have liked me.

There were five doctors waiting in this room for us with all kinds of machines, I thought, “now this is service”…normally they tell me to go home, alternate between Tylenol and Motrin, and call my Pediatrician in the morning…

The Head Nurse looked me right in the eyes and said “I want to congratulate you for being the most calm mother I’ve ever seen” I smiled, accepting the compliment and started to say that we usually don’t panic, were very ‘level headed’ and laid back’ before I could finish my sentence she was yelling at me for not calling an ambulance. For what? I thought. I still had no clue.

An hour later, I knew something was wrong, my son was sitting up playing and flirting with the pretty nurses and volunteers and I was the only one in the room who seemed to be happy, not including my husband who was also clueless. I said, “Now Please, I don’t want to just take him home tonight without you running any tests, I want you to run blood tests this time, just to be sure.

The doctors again looked at me funny, and agreed that blood tests were necessary and that they didn’t think I”d be going home right away. “FINALLY”, I thought, someone who is thorough! I would rather spend the night and figure out where these fevers keep coming from.

I’d say 15 minutes later the doctor announced that the Hemotologist on call was coming down to talk to us. I started to realize that something was really wrong…I said to my husband, “you stay here, I’ll go get pajamas for us and I’ll be back in a few minutes”. Now I KNEW something was SERIOUSLY wrong. I FELT it. My legs barely carried me to the car.

The next days were spent in the PICU at the Valerie Center, and then on the floor of Morristown Memorial Hospital, they should be a blur, and I guess at the time, they were, but now more than a year later I remember every single minute. It is my hope that we can prevent other parents from suffering the same we did. It is also my dream that someday, with enough support, our Government will step up to the plate and start properly funding research for all cancers, not just the ones that make the pharmacutical companies rich.

We were told that we had to be admitted to Memorial Sloan Kettering Cancer Center in April for a bone marrow transplant. (We were actually given a choice between CHOP and MSKCC, we chose MSKCC). We were told that due to the severe nature of AML which happens to be the “adult” type leukemia, there was no other chance. This leukemia will come back and kill him if we do not find a donor and soon. (This is another reason to share our story, we believe that if people know how difficult it is to find “a match” that more people would ‘register’.) While so may of us, myself included think we are heros for checking for “donor” box on the back of our driver licenses- nobody realizes that you can save a life while you’re still alive.

Our donor (or Angel sent from above) came in the form of a 58 year old man currently residing ’somewhere’ in the United States. You think, no big deal right? Wrong. The registry has six million people willing to help and there was only one match for Julien. Imagine the odds of needing a donor of your own, or for your child? Juliens transplant took place on June on 29th, it was the most exciting moment of my life- my anxiety level was so high that as scared as I was, I knew that we had to celebrate, (this is my defense-) The transplant is actually “stem cells” taken from the blood of the donor and given to you via special IV which goes directly into your blood stream. After the “tranpslant” all you can do is sit back and wait. We were told that we could have ‘this complication’ or ‘that complication’ and- NOTHING. Julien was still dancing on his bed, flirting with the nurses. We left the hospital a few weeks after transplant. EASY. We had to keep Julien away from all of his friends which was very hard because he missed them so much, but now he had NO immune system. Time progressed and things got better.

I woke up on October 15th and cried, I realized that we had made it to Julien’s 4th birthday- there were so many days when we just didn’t know if we would.

Less than one month later we received the second worst blow of our lives. The leukemia was back, stronger, smarter, and more aggressive than before. Your choices: do nothing and enjoy weeks or perhaps months of a ‘quality’ life, or risk undergoing new chemo regimens that may or may not work, that he may or may not survive, hoping that IF they can get him into remission, that he won’t die of an infection before we can find a donor to do another transplant.

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