How about you help Caesar, now?
Caesar Sant turned 8 years old in this past August. We just got a new website for him https://caesarviolin.com/
as many of you have suggested us over these two years, but only now we were able to put it to work. We'll try our best to do a daily posting on it. Please, consider to share, subscribe to get inside of his journey.
He was born in Providence (RI) but currently, lives in Winston-Salem (NC). Here is his Facebook to get to know more about him and follow his journey. He plays the violin with incredible skill and joy. At 2 he started Kumon and violin. By 4, he was reading 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. At 5 he earned the black belt (Little Dragon’s) in Karate.
Caesar was born with sickle cell anemia what brought three strokes to him
in a span 2 years, though until the age of 4 he never ever needed any hospitalization.
Although 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, 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 he got to managed again, and the others got in 'slow motion'. But hope is everything!!
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) - in Sep 2016.
Without hope-faith-love, we certainly would be that far.
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 if go through bone marrow transplant that can (~95%) cure this anemia. Then, we decided the best option was to work on such direction by having a sibling.
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 on December 2014), who can preserve Caesar's life and be spared from suffering herself. Her umbilical cord blood -- that has the perfect compatible cells -- was collected and store for the transplant.
We aimed to have the transplant done in 2015 or 2016, but it's not an easy proce
ss. We didn't have money.
The hard learning is simple: as we don't have the money to pay such expensive procedure process which goes way beyond the bills itself such as the post-transplant needs etc... we are hoping that it will be done in 2017.
We have traveled and spoke with many transplant centers and specialist. Basically, we got stuck with the lack of money to move ahead.
Caesar has enriched our lives in so many ways- his bright smile, his beautiful music, and his unwavering passion for learning. It has been torturous as a parent to watch him struggle to sit up, ho
ld his violin, or run and play with his five-year-old sister, Maria-Anita. Please, if you are able, help us cure Caesar. Please give whatever you can. Many of you have reached out and asked how you can help, this is the best possible way. We need your help, my friends. Caesar needs your help.
With love and gratitude,
God bless you
We would like to take the opportunity to thank everyone who had come along and helped us in many ways. Among those, not limited to, are Make-A-Wish, Foundation, Mr. Itzhak Perlm
an, Father Demetri, Greek Orthodox School; Dr. Sam Deadwyler; Dr. Hunter Bradley.
Lucas & Aline - Caesar's parents
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
2 Caesar story feature on Our State Magazine, 2014 - before the 3rd stroke
3) Playing US National Anthem in the same month he turned to 5-yr-old - it was after the 2nd stroke)
4) Playing the Brazilian National Anthem at the 4-yr-old
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 doing Math at 4-yr-old, after the 2nd stroke
8) Doing a spontaneous fun thing he always enjoys do that in the mornings: Conducting Tchakovisty at 3-yr-old
God's bless you
Lucas & Aline - Caesar's parents
Thank you for your support. Without it, we certainly got stuck away back with only sadness.
With Love & Blessings,
I'm particularly happy about being able to manage to travel him for such procedure. My body is still depleted, lacking about 40% of its strength as result of last week have entered at ICU with heart stopped (they had to do two CPRs to bring me back after almost 30 min out) and once again, God guides his sons and everything was done accordingly. Another good news: Caesar ferritin/iron level has dropped by a 1/3 as a result of our extra effort to decrease it. Iron level accumulation is the major 'collateral' effect from such periodic blood transfusion. As I often mentioned, the stress level to manage and keep Caesar's health stable while his bone marrow is not done, it's quite indescribable --away beyond normal thinking could believe -- and great part comes directly to my shoulder. On the other hand, we are very blessed because he has been very stable, happy, the anemia is being managed without much hassle, however, he can't stay, we can't hold such a situation for too long. I feel like holding the breath in this situation. Caesar very often asks when his transplant will be done for him to be free of the anemia! It's really tough. He'll be 10-yr-old next month.
He woke up, had breakfast and played with his sisters. It's incredible just by seeing him happy. In fact, his happiness is the major inspiration that holds me up as well as his family.
God bless you and your family,
CAESAR MONTHLY BLOOD TRANSFUSION. It was yesterday (5th) at Levine Children's Hospital, Charlotte.
Here are some links to the last updates before this one:
-MEMORIAL DAY, Caesar playing the National Anthem with his sisters: https://bit.ly/2JncosP
-May 4th --- Caesar watering his garden https://bit.ly/2sLO1L2
-May 2nd: Caesar remembering the beloved Mastro Leonard Bernstein: https://bit.ly/2HtKWVi
Although everything it's ok, the iron accumulation on his body is bumping up what has a toxic outcome to the vital organs (about 30% of the blood, the red pigment, is constituted of iron) so that the blood transfusion though it's an 'ultimate' medication for who really needs, it has another side = overload the body with iron, what is toxic.
The medication to decrease causes more side effects which one of those is the stomach irritation. In Caesar's case, who doesn't have much enthusiasm to eat almost anything --one of the reasons his weight is very low -- is a high risk that we can't afford to take it: it's very likely that it would put him extremely close to really gets sick. Again, we can't effort it; on the other side, we found out a natural way to kick it (the iron level) down, it just demands more efforts and money.
( It's kind of job beyond the medical/hospital matters once they (and we do the best team ) do the best to help and then the parents must do their parts, our 'homeworking'.)
It's our fault! More sincerely, it's my fault once during this time I've learned how to deal/manage this matter quite nicely. Unfortunately, I've operating like that old engine: sounds really needing to replace pieces in order to operate with more optimization.
MORE IMPORTANTLY, the yellow light was turned on: all the best efforts will put (already stated) to drop his iron level down as we have done before. Amazingly, everything is naturally by combining a bunch of natural approaches such as special herbs, essential oils etc.... The challenger here is that fact that it really demands your full attention, dedication, the best efforts and above all, your Love: complain less and being present to service your family.
We are so blessed for Caesar doesn't have pain for several years. Other than his legs, as result of the last (2014) stroke that makes him not yet fully overcome to be called 'normal', he sounds, in fact, quite a healthy 'normal' boy due to his inner happiness (spirituality), the sacrifice of his family and equally important: your support, a good number of friends, and again, YOU! We hope that we'd be able to hold him like (but not for more, too long..) that until we do have the money to do his bone marrow transplant what has the chance (~95%) of a cure for this anemia.
It's also very important the highlight that the fact people (real heroes, fighters) with this anemia that Caesar was born with --Sickle Cell -- in general don't do anything of the activities that Caesar has been done and does, and unfortunatelly have much less healthy stability, though a relevant number is put on chronic blood transfusion since around 6 months of age and then when you talk to these folks, the fimalies, you see stories of strokes, pain, sadness, discriminations (etc), but the Love and sacrificy of parents make them stronger anough to move ahead.
UNACREDIDABLY, yesterday when we got home from the hospital, after a tough day, the boy just smiled beautifully when I parked the car. No words to say! That's where I've seen God! Then, you ask him 'how do you feel' and he says, "Happy". Then, I just cried, crashed .....! I can't imagine who wouldn't be crashed in such situation. It's indeed too much! .....After Aline gave him a shower and ate a bit, I convinced him to go out to walk without shoes on the grass with his sisters and water the garden. Though he doesn't like to stay without shoes, he went and was willing to run with his sisters -- what they did.
Today, they are playing the whole day, period.
April 29" https://bit.ly/2I2dFVe today: rest day of legs working and a good violin worked one
April 28: https://bit.ly/2vTmKuY Working outside with Caesar: challenging terrain: to go up-down
April 27: https://bit.ly/2vYHlOt Caesar's sister best friend, Maria-Anita, who got a full scholarship at Sawtooth
April 26: https://bit.ly/2JEntSP Working on Caesar's leg reflex: A big suggestive text where I describe with more details many topics about Caesar
April 25 https://bit.ly/2r8lHCB Caesar treating his teeth
April 24 https://bit.ly/2r5P4p6 Caesar having fun on his bike (reward) in the of our hard working on his legs
April 23 https://bit.ly/2FebyIy Working on Caesar's legs yesterday evening. Our hard work never stops
Basically, as you can see in the posts, Caesar is steadily health, his legs are getting even stronger, but this coming week is the week battle: it the week of his blood transfusion (he has to have one monthly) which is aiming to avoid the chance of new strokes. He really getting more and more resistant to do that and well understand it. However, we don't have many other options, we get to do it anyway.
HOT GOOD NEWS: We are getting new lights of hope that it sounds like we'll be able to have his transplant done by end of the year or so. It's a very promise thing that I'll be able to disclose it further in time to come -- it sounds real.
Thank you again for the wonderful donations it' simple like that: we won't be today with his gained without you. So, you are already part of his journey.
Also, consider sharing his story with your best friends/family and/or social media as a simple way to further help him.
With Please & Love, have a great week. Thank you again,
500K for what?!
I hope my collaboration helps you continue smiling and sharing the talent that God has given you! May God bless your journey!
I hope everything goes well and you reach your goal i have yet to recieve a donation for my campaign but i donayed to yours we hopeful future moms and current moms must supoort each other
Don't have any money to contribute right now, but am wishing for the best for your family. My niece was just diagnosed with Leukemia on Christmas. Stay strong for little Caesar ❤️