HOW ABOUT you help Caesar, now!?

CAESAR SANT  is a  13-yr old boy,  born in Providence/RI in 2008. He was born with an anemia called sickle cell that brought three strokes to him after the age of 4-yr-old.   CAESAR SOCIAL  MEDIA:  Instagram:   https://bit.ly/3vq45Uq ;  Facebook:  https://bit.ly/3K5uQ4U     Twitter: https://bit.ly/3stg1mu 


Caesar taking his favorite bath with essential oils at Children's INN at NIH after his bone marrow transplant


After  7 years of fighting, his bone marrow transplant was successfully done in Maryland at the NIH, in September 2021. Finally, he is free of this anemia, though his legs are still weak due to the strokes he had in the past, and the transplant cannot avert it. He has to keep working hard to overcome this part, what we are doing. Furthermore, he is healing at home, Memphis/TN and doing well – thanks to God, who put us under the hands of the NIH Family: a remarkable group of nurses, physicians, and scientists. Equally, relevant in this process was the Children's INN, a place like heaven where Caesar spent months resting before  and after the actual transplant. 

Caesar during his bone marrow transplant: after receive Helen's stem cell infusion—Sept. 2021. His always held himself in high spirit. 


Interesting, the boy never had color in his lips/hands because his hemoglobin –our blood's supply energy– a measure that we need to move around (literally to be alive), was incredibly low around #6, and even though he was able to even do karate from 2 to 4 years old and takes violin – Love is the answer! So, his number is crossing #10 (almost 11), which average is 13-15 for kids his age. It's not that high yet because he has to take some post-transplant importantly medications that also bear this number to go higher. His energy (power) is in the roof, as well as our pure happiness-heavenly – I do think that it's true to everyone around Caesar's story!!

Caesar, performing for NIH family, last thanksgiving (Sept. 2021), THE  FOLKS WHO SAVED HIS LIFE.  We do love them so much:  They are Caesar's Heroes forever. 
A special thank you to all Caesar's supporters, friends, who indeed turn this thing around, donating here or reaching out to us, directly. And a super special thanks to National Geographic for reaching out and making an international documentary about him. It  was a real game change. I just can't imagine we reach this other side without such vital supporters, though nothing is indeed free for real: there is a price to pay regardless. Nevertheless, the whole family was put under the bus, as a father, I had to lay out a very personal quota here: one heart attack and a stroke, respectively in 2018 and 1019. No other word to describe how I came out from there:  semigrave situations:  miracles!  

Caesar featured on the National Geographic  It was a GAMA CHANGE FOR THIS OUTCOME. In fact, for the whole family, if not saying for the entire sickle cell worldwide community. Forever thanks to the National Geographic for it:


 RELOAD IT AGAIN: Caesar has two sisters: Maria-Anita and Helen. The first one was born with sickle cell anemia like him, and already had one stroke, but she is doing ok; the second one is 100% healthy and full match to her brother. So, Caesar's transplant was done by having his sister, Helen, as a donor. However, Maria-Anita needs a bone marrow transplant, too.  Helen is not fully compatible with her, just half matched. Then,  in order to avoid a similar fate to her brother, we must rush to have her transplant done urgently because  she just turned 12 at the beginning of this month, and with puberty looming, the chance of this blood disorder aggressiveness coming up is high. By no means, we can't afford to wait years to have her bone marrow transplant done. The alternative is to take the advantage of one of the medical resources called the Haplo (haft match) approach. Helen is ½ match to Maria-Anita. Though the outcome from 50% is not as great as a 100% match. Still, it's a medical option that we must try. Further, clarifying, according to the transplant doctors, one of the hurdles of half match is the amount of chemotherapy and radiation used that is much higher than the full match – the option Caesar had. Aside from the post-transplant complications  (graft versus host disease—graft vs. host disease)   which incidence is higher in half match, if a person goes through these, the outcome could be as satisfactory as the full match option. Again, we have to reload the whole thing and go through it with Caesar's sister, our lovely Maria-Anita.

Soon he was release from the hospital and got home, the trio (Helen, Caesar, Maria-Anita - left to right) went to cook  something together.



-Does NIH do it? A common question we already got a lot. Currently, no. NIH works based on study protocols, like the one they used on Caesar: 'a full related match'. Helen is ½ related (match) to her sister. Therefore, Maria-Anita health needs don't match NIH protocols. 
 -Where would we go, then? Many institutions are working on this half match transplant option as well as other options such as gene therapy, code editing, just to mention other options out there. We are more interested in the half match for Maria-Anita because there are more data about this medical approach than the other options. After talking to different places, one of the best places – due to the long experience with it– is located in  Minnesota. We just started working on this process to get Maria-Anita transplant happen there.  Now as Caesar's situation is settled down, our whole energy will converge to help his best friend, owner of my heart. 

 Yes, we had no time to rest, to celebrate, and are already reloading. We hope that the experience of dealing with Caesar's transplant will help Maria-Anita. It's indeed a process: from the beginning to the end. Caesar's started around this time last year. Pray for us for around this time  next year we'd be able to share another great news with you.

May we count with your help? It'll be vital to be able to give a similar report as we are giving about Caesar.

Photo:


 In Winston-Salem NC


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