How about you help Caesar, now?

CAESAR SANT  is an 11 yr old boy,  born in Providence/RI in 2018.  After many years trying to raise funding for his bone marrow transplant, unsuccessful, we moved to Memphis/TN last Feb 2019 aiming to have a Caesar bone marrow transplant around here, and we ended up choose  Vanderbilt University as the best option for Caesar (I'LL EDIT IT LATER IN ANOTHER DAY. At the beginning it was very confusing:  first, we tried with  St Jude, which policy, especially in case of patients with sickle cell; not the case for Cancer requires  the family/patient must be living around not farther than 100 miles from the hospital. But we were blessed to reach here  anyways. Our journey took several years and cost huge debts as a result of accumulated bills. Thanks, my great friend, Leo/Debbie, we bought an old house that didn't have even central AC but it was enough to make this move to Memphis possible. Though we'll not be charged for the cost treatment because Caesar has Medicaid,  there are whole extra related changes which could be even higher and depends on how much a family is able to put into supporting the whole process. We have put all we had so far only on the so-called pre-transplant phase. It simply means that the family must keep the transplant candidate as much as possible close to a health perspective because the stronger the patient is before the transplant, the higher is the chance of diving back from that deep water if it is possible to translate such a mean.  Transplanting, all the best efforts possible have been deposited to support Caesar's vital organs to not have too many compromises due to the chronic/monthly blood transfusion because on one hand it is a medical approach  designed to extenuate the risk of new strokes, it also injects tons of iron elevating its level to the roof posing risk to the body's vital organs, mainly the liver, lungs, heart, kidneys.  Even after all the efforts, those organs started showing the level of stress of the high level of iron (toxicity) deposited there. The standard medical protocol views it as more medication that causes other side effects. Taking him to see different physicians opening up to using alternative approaches, as well as unconventional medicines altogether combined with unstopped research, has helped him to have a quite reliable health standard. As a result, for the first time Caesar was admitted for pain medication. When it happens, it takes about one week for the whole thing to come back to normal: no pain with him feeling well again.  Last week (June 21st, 2020) he had a similar pain complaint in his joints. While I'm working here editing this 'old' text, he is watching cartoons with his sisters and mom. Now, with this plague of coronavirus, we are confused but not too much because we are God's orientated family, and He has guided us until here was not funny at all. We'll make it through, we'll win. Answer another common question about the possible cost for his  post-transplant, it's equally important at the part called  'pre' and the transplant itself. It poses a greater risk though because the patient will stay taking drugs to keep the defense system low in order to avoid rejection complications related. Therefore, more effort must be put into this last phase. It is worth highlighting that transplant centers usually do the typical outstanding job, but the patent's family must carry it on with the guards high. Caesar is blessed to have the unconditional love of his family (his sisters die for him) and have learned to work together in a way that sometimes they spend the whole year without being infected by even influences/cold. Now, at this top risk time, we just got even more isolated, but hope never dies.
 
Caesar featured on the National Geographic 



WHEN THE TRANSPLANT WILL OCCUR? Great part of this answer is already written above. The shortest answer is: We don't know yet. In fact nobody knows at this time with this pandemic. By all means, if it was on our hand, it has already been done. It’s double risk standing in this path for any longer. It's too much stress/sadness with this matter so far: me, Lucas, his father, had a heart attack lest (2018) and a stroke in August 2019.  On the other hand, Caesar's health situation is stable, but he was born with this blood disorder that is indeed a trick: it may hit you at any given time with huge pain. We’ll keep our best effort possible on this so-called pre-transplant phase. Meanwhile, Caesar keeps asking EVERYDAY when he will be free of this crazy anemia -being 'normal' like his sister, Helen. 
WHERE WE ARE? We moved to Memphis/TN in 2019. We as a family goal number one is to get Caesar’s born marrow transplant successful. In the meantime, do all possible to avoid any new strokes. He started a new medication that holds a lot of promise. In fact, he sounds more ruber colorful and stronger after it.  Again, this bone marrow transplant has around 95% chance of cure for this anemia. There is also a recent revolutionary approach using  gene-editing technique called CRISPR, which positive results promise a new revolution in the field. Our goal is solely to get it off the sickle Caesar was born with.

A GOOD PLACE = We moved to Memphis thinking about St Jude, but it ended up sounds that Vanderbilt offers an approach that makes us more comfortable with. So, we do hope that it will take place there, in Nashville, TN, but we never know. I do think that there is not a single person (perhaps even living in a hole)  in this world who is not confused about everything after the coronavirus; everything became possible and at the same time, impossible. Everybody must be creative to survive, I think.

 NICE AND LOVELY RETURN: Now from one, for each donation, you'd have a music track of Caesar's 'Heaven's Gates' album that he started working back last year. All you have to do is provide you e-mail address which is no longer provided by GoFundMe due to privacy policy matters. Caesar has several tracks already recorded over one year (almost two years) ago. Two tracks are available at his site: <www.caesarviolin.com>. Again, your email address is needed for us to send the music track. We hope that he could finish the album that stayed on hold, before his transplant, but these matters are not dependent. 

Like any other child, Caesar is a very special boy and since very little.

Although he was born with this bad anemia -sickle cell- we believe that Education is the best way to pave new opportunities and open new doors so that IT  helps with many ways to move ahead. Therefore, at the very early age, we started this process to support his natural abilities. The positive of beauty with love must replace the negative so that we never got stuck thinking and complaining about the ugly and sadness of this disorder, rather working even harder since the beginning to have something to work with positively unsteady or brace the whole hideousness of this whole thing. So, he started taking violin lessons at 2 with incredible skill and joy; and the Kumon (a Math & Reading) program roughly at the same time. By 4, he was reading and writing fluently. At 5, he was doing the third-grade math. Since he was a toddler he started learning different languages such as Greek, Chinese, Russian,  German, Hebrew.  Around that time he earned the black belt  (Little Dragon) in Karate.  Then, the anemia which blood disorder is more than tricky starts to be more severe bringing strokes to him = nightmares. It was just ‘delayed’ because usually it brings its clinical spectrum much earlier. The 3rd and last stroke (2014) literally almost killed him due to medical bad arrangements but those folks never take any responsibility for wrongdoings.   He had to relearn pretty much everything. As you can see, part of his story featured by the National Geographic, depicting a fairly summary of what he has undergone. 

Unbelievable, but Caesar is the happiest person you can imagine. I have no idea where such positivity comes from. Certainly, it comes from his inner which the main source is God. (KEEP  READING BELOW)

CAESAR WITH HIS SISTER (Maria-Anita and Helen) outside of St Jude (June 26, 2019) while the blood for his transplant was up to come
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NOW, WE FINALLY  moved to Memphis/TN (below photo) in order of he has his bone marrow transplant. It right after we moved to Memphis, 2019 - I would call it a history photo becuase it was the 1st visit to St Jude - the hospital that we originally aimed to have Caesar's treatment at.
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Below: February 208: were packing to move from Winston-Salem/NC to Memphis/TV
472473_1547918288769726_r.jpeg472473_1547918716801848_r.jpegAlthough the previous two o strokes did not cause much neurological damage, the third one (June 2014) left him temporarily paralyzed and unable to walk by himself for 6 months. Basically, he got to a stage where even his eyes were not moving. As a result, he had to relearn everything from the scratch: the violin and Math parts, he greatly recovered,472473_1547919306434089_r.jpeg
though his limbs and fingers (mainly on the right hand) are still weeks); the languages not too much:  with slight exception for Hebrew and Russian that has been challenging to grasp it  again; and the others got in 'slow motion'.  But hope is everything!! National Geographic:  https://bit.ly/ 2Gyk1rA  did a documentary on him. More recently, Make-A-Wish Foundation granted him with a wonderful wish to play for his idol, the icon, and great violinist,  Mr. Itzhak Perlman that happened in Richmond (VA) - on Sep 2016. Without hope-faith-love, we certainly would be that far.

 (Read more below)
 



Although most sickle cell patients receive blood transfusions after strokes to prevent another crisis, Caesar’s parents knew that more blood transfusions would only ease the symptoms, not cure them.  The only and best outcome would be to go through a bone marrow transplant that can (~95%) cure this anemia. Then, we decided the best option was to work in such a direction by having a sibling. It was very costly. And we got our lovely baby Helen, she by far much more than Caesar's donor, she is the heart of our house. 

He is currently under chronic/monthly blood transfusion. Yes, it doesn't cure anything. It's mitigated (decreases) the changes of new strokes, on the other hand, it has a number of side effects among them organ damage, iron overloading, multiple antibodies, etc.


THANKS TO THE SUPPORTERS LIKE YOU, Caesar's vital organs are good, he doesn't have many antibodies, his iron overloading is NOT skying hocking as it normally does after a long period of blood transfusions.  Many thanks for his previous lovely Hematologist: Dr. Daniel McMahom -a nice-fair person- from NC with whom we worked with a trust relationship for about 5 years seeing him every month for a blood transfusion. As a result, Caesar's iron was stable throughout this period: no organ damages.  In addition, we learned how to control/take it down and totally naturally. But all these are very costly financially, emotionally.... June last (2018) had a heart attack: I was dead for 30 min and by God miracles, I brought me back. In the end, it's the parents' job number one to DEVOTE to the children. That's the core of my family. Yes, it's a complicated business, but it's a kind of thing that you have to have patience, faith, hope to work hard and leave ALL on God's hand to make the final decision. 


After all this: we decided to go through in vitro fertilization (IVF) in order to ensure that we do not pass along the sickle cell gene to another child, as well as to find a 100% bone marrow match for Caesar. Then, we were able to have one healthy and beautiful child (baby Helen, born in December 2014), who is much more than at it's called "a savior' life, our baby Helen became the central heart of our family and Caesar's best friend aside of his other sister, Maria-Anita.  Basically, Her umbilical cord blood -- that has the perfect compatible cells  -- was collected and stored for the transplant. 



Many THANK YOU for your SUPPORT,

With love and gratitude,

God bless you


Sant Family:  Lucas & Aline - Caesar's parents  - <www.caesarviolin.com>


Also, below are a few links with the latest news and +info about him:

1) National Geographic documentary about him after the 3rd stroke - launched on March 12, 2015
http://video.nationalgeographic.com/video/news/150312-child-prodigy-violin-sickle-cell-anemia-vin

2 Caesar story feature on Our State Magazine, 2014 - before the 3rd stroke

 https://www.ourstate.com/fiddle-violin/

3) Playing  US National Anthem in the same month he turned to 5-yr-old - it was after the 2nd stroke)
https://www.youtube.com/watch?v=vvkioWERIfY  

4) Playing the Brazilian National Anthem at the 4-yr-old
https://www.youtube.com/watch?v=bL7KYQt-uek

5) News on the 2nd stroke http://www.huffingtonpost.com/2013/05/25/caesar-sant-four-year-old-violin-prodigy-north-carolina-debilitating-disease_n_3331356.html

6) News on the 2nd stroke  http://www.journalnow.com/multimedia/videos/news/video_8f4aebea-a6ce-11e2-9771-0019bb30f31a.html

7) He is doing Math at 4-yr-old, after the 2nd stroke
https://www.youtube.com/watch?v=_UfCMi9vIdc

8) Doing a spontaneous fun thing  he always  enjoys do that in the mornings:  Conducting Tchaikovsky at 3-yr-old
https://www.youtube.com/watch?v=DeNEr1kK6Es


God's bless you

Lucas & Aline - Caesar's parents

Donations

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  • Jane Whitehurst 
    • $50 (Offline)
    • 1 mo
  • Cindy Savage 
    • $50 (Offline)
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    • 2 mos
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Organizer

Lucas Sant 
Organizer
Memphis, TN
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