How about you help Caesar, now?
Caesar Sant just turned 10 years old in this past August. He has a website: https://caesarviolin.com/ as many of you have suggested. Also, we're trying our best to do a daily posting on it on his Facebook: http://on.fb.me/1UwERbw Please, consider to like, share, his page to get inside of his journey. He was born in Providence (RI) but currently, lives in Winston-Salem (NC). 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 manage 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.
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 a bone marrow transplant that can (~95%) cure this anemia. Then, we decided the best option was to work on such a 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 in 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 process
. 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, hold
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
a 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 Tchaikovsky at 3-yr-old
God's bless you
Lucas & Aline - Caesar's parents
Here is Caesar having his monthly blood transfusion today (Nov 5th) at Levine Children's Hospital/Charlotte. This photo is from right after I fed him and have taken him to the bathroom. The transfusion was ok without extra inconveniences. Those folks are on top! Except to the challenger to drive him to Charlotte with a slim/narrow tires car (it was raining), and to return, God helps us too: as my eyes got very bad, the light from others car was making me drive with extra attending. Above all, though it was a rough day for us, I can tell that we should be blessed for having one more of it done. He hematologist enjoyed seeing him and very happy to notice that Caesar stable, overall is doing well: above the average of his patients (several hundred). Once again, it's the best way to ratify the 'homework' efforts that we put to keep him healthy and stable = it's is a worthy approach. These transfusions aim to mitigate to coming of new strokes (he had 3 of those) while his bone marrow is not done.
I do really hope that in this upcoming year we'll be able to have his bone transplant done. I just can't see myself held for too long doing this. It's keeling me, literally.
SPEAKING FORWARDING: That's the reason we're putting all the effort to get this CD/Album ("HEAVEN'S GATES":) out before this Christmas. We'll start the rehearsals next week.
Here is Caesar CD/album repertoire list that we are working on 1) Bach: Ave-Maria| 2) Hallelujah| 3) The Swan| 4) Ode to Joy| 5) the Lord Prayer| 6 ) How great though Art| 7) Happy Birthday| 8) You Raise me UP| 9) Amazing Grace| 10) Lullaby by Brahms.
Two weeks from now we'll start the recordings. Most of these pieces he has been playing since when he was little. We won't put any of the big pieces on it. It's almost a praying/blessing album and started to be beautiful already. It's a result of his music maturity that is growth enough, what was not there like a year ago. We are so thankful for the support of his violin structures. And I do coach him at his violin practice pretty much every day for 2-3h.
You can further help Caesar right now either via Caesar's GoFundMe http://bit.ly/1OmH0RM or reach us out.
The main goal of this Album to raise the funding for his bone marrow transplant that is held for over 4 years due to lack of findings.
FURTHER DISCLOSES: the Spectrum (former Time Warner) did a nice documentary about him several months ago that was scheduled to be aired on this past September, but they postponed to this upcoming January. Besides we'll put the album available at as many digital platforms as possible, we'll take the proper advantage of such news, that will be national, to boost the album. We'll be called other Tv networks, primary the ones that have done news about Caesar to help on such promotion as well. We'll send a copy it to @Ellen DeGeneres of whom we are fun too.
In the end, I hope that this indicative will REALLY help my boy. In fact, it was originally suggestive to be done when he was around 5 but he got sick, and again sick, again, so that we never were able to seriously work on it. Frankly speaking, we all say that God has a plan, but the fact of the matter is nobody like to live on it, to wait for His determination. I think to wait, suffering has all to do with to be humble practical speaking,
Love & Peace and let's keep in touch (stay tuner) dear friends,
This update/post must make you happy.
PLEASE, READ THE WHOLE DESCRIPTION. Here is Caesar lovely playing with his sisters, Maria-Anita and baby Helen (do you remember of her, the borning baby on his National Geographic https://bit.ly/2RPY8db Documentary, here?) from yesterday. The main purpose of this video is to show how his much of recovery he got on his legs, though still not well for him to stand up at one leg, and as we got resumed the working on them, he really got a good improvement as a result of it. We've been worked on this last three weeks. To be fair, for about a week we haven't work on his legs as a result of his monthly blood transfusion, last week, and also for we spent about 3 days without electrical power due to the Hurricane Michele that put a great part of the city in the same situation. But a blessing is a blessing and we got this after all adversities above mentioned and other horribles. Thus, our job is not done yet: his transplant has to be done and you can help. It's being 4 years that we are working on it. Please, go to Caesar's site: www.caesarviolin.com to read more about him and his journey. Once again, though we got this and other great signs of progress, he still 'on hold' with his bone marrow transplant (due to NO money) the only way to cure the anemia --sickle cell -- that he was born with and you can directly help him, now, please. Here are the two fundraisers a) GoFundMe: http://bit.ly/1OmH0RM ; b) a new one https://bit.ly/2MAasuB that we do have for such above purpose.
Please, ready this discription of CAESAR' OCTOBER BLOOD TRANSFUSION. It was yesterday in Charlotte, Levine Children's Hospital. As the usual, it was a day full of all kind of stress, but we made it and got back home safely. He woke up today, help to make his own juice with his sisters, play with them normally, and with his Star Wars Puzzle Station.
ate, took a big nap and woke up wanting to go out: 'bye-bye' means: want to go out do what he to have a diner, he loves this. As a promised, it must be done. Though my blood pressure gets higher in the week of blood transfusion, that brings a headache that makes me feel really sick (I couldn't get into sleep in these last three days), I to hope this night things will slow day so that I'll feel better. However, once the job is done, we must see the blessed above all. Once again, the boy feels happy! And as a parent, I always believe that our job number ONE is to protect with all your means the little ones. That's it. Next month, we'ready have the day for some crazy thing. For how long we'll be able to do that? I don't know, but I worry about it all day long. In the end, it has to be done at it is a medical approach which aims is to mitigate the new strokes while this bone marrow transplant is not done. It's being 4 years that we are begging for money to move forward with his transplant that sounds like no many cares with an exception for a few good folks to whom we are tremendously pleased. HERE ARE THE WHATSGOINON
-A) We even put a new fundraiser aim to do it in India https://bit.ly/2MAasuB which has not brought much.
-B) Recently, I exchange, once again, with St Jude Hospital (Tennessee) and only NOW they are working on a new protocol that will allow they accept patients from other States. The good from this is that fact in a range of a year they will start to have their service for folks like Caesar for his bone marrow transplant.
-C) In March of the current year the Spectrum, former Time Warney, did a nice documentary about Caesar, like the one the National Geographic did in 2014, and it was scheduled to be aired in September, last month, but they postponed to January 2019. (as I said many times: if we have the money today, tomorrow all the arrangments were in place to move as faster as possible toward Caesar's transplant. Right now, the best available option is to go to India once they have a state-of-the-art institution that has done over 1,000 successful transplants like that Caesar needs in the last years and the which cost is about 10% of here in the US.
D) A NEW/OLD PROJECT is coming to be real once he got play his violin so well. We'll start, finally, recording the first tracks of Caesar's music, between next month and December to have his first CD that will be in the of a number for it. We'll commercialize one by one (not wait for the CD gets ready) via social media and other electronic means.
HERE IS WHAT WE DO NEED ASAP: a) a media guru, b) If you are in, or know someone, the business of recording/distribution of music, in this kind of business; c) and we do need an overall support to get this project done.
As you can see, we never stop working. In the end, we are really blessing for at least has things on the shelf that could turn into reality at any given time. Yes, without God, I can see any project be fruitful, even when I was working gas a Scientist, we always ask the Lord to bless it. So, I do believe that He will not let us down because He has guiding, testing, advising, spares my, healing us over-and-over so that my family will be able to be fully happy with Caesar finally be free of this chronic crazy blood transfusion that makes anyone sick only to think about it.
Also, you are welcome to reach out, please. We are open to suggestions.
Thank you for your help,
With Love and Peace,
Also: Please, visit Caesar's Facebook: http://on.fb.me/1UwERbw for getting all the regular updates that we are putting there
As an often question, and recently it came up again, some friends have suggested/asked why we don't take Caesar to do his bone marrow transplant in St Jude, Tennessee(?). Well, I just had a new exchange with a physician who worked there with transplant and we heard the same as before: St Jude policy says (in 2013 I got to know about St Jude Policy) that only patience local there are eligible to be treated there which treatment is 100% free. However, HERE IS THE GOOD NEWS: They started working on a new protocol that will allow accepting patients from other estates. It'll take around 6-8 months to the new protocol will be in place. At least we do have another alternative plan to count with. If we have moved to Tennesse a while ago, we already did Caesar's transplant, but 'if' is life always comes later. In a meanwhile, we put a new FUNDRAISER https://bit.ly/2MAasuB aiming to take him to do his bone marrow transplant in an Internation ranked hospital in INDIA --in the last year, the same hospital did over 1,000 successful transplants-- which charger is about 10% less of here in the USA. As we mentioned before, we had the money yesterday, today we're working on the documents to go there to get this final job done. Can you further help on this?
Caesar's father, Lucas
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 ❤️