S.I. school hosts dance-a-thon to support 9-year-old student with sickle cell disease – SILive.com

STATEN ISLAND, N.Y. When Micah Thomas was born, he underwent the mandated newborn screening for sickle cell disease. When the news came back that Micah had the disease, he became one of the roughly 2,000 children born each year with the inherited red blood cell disorder.

Now, at just 9 years old, Micah has been advocating for himself and others like him with sickle cell.

Its why his school, PS 29 in Castleton Corners, recently hosted a dance-a-thon and blood drive for sickle cell.

I was thinking of something everybody in school could do, so maybe a dance-a-thon. And I like dancing at school, he said.

Principal Christine Zapata explained she became principal when Micah was in first grade. She had always discussed hosting an event for sickle cell with Micah and his mother, Monique Faure but Micah had been sick for a better part of his first-grade year, with frequent stays at The Childrens Hospital of Philadelphia. And then the coronavirus (COVID-19) pandemic led to even further delays to host something at school.

Micah stands here with his mother Monique Faure, left, and PS 29 Principal Christine Zapata. (Staten Island Advance/Annalise Knudson)

Micah had to undergo six surgeries, including his most serious the removal of his spleen. But Micah never missed a moment of schoolwork. He was introduced to remote learning even before the coronavirus pandemic, which allowed him to interact with classmates and learn from his teachers while he underwent treatment and recovery.

The support from the school was amazing, said Faure. I think everyone was I mean, they checked on him. We had people come down and check on him. I mean it was amazing. So when Principal Zapata says its a community, it is definitely a community here.

SEVERE SICKLE CELL

Micah is battling HbS beta thalassemia zero, a severe form of sickle cell disease.

It expresses just like sickle cell, even though its sickle cell beta thalassemia, hes treated just like he has full sickle cell, said Faure.

Sickle cell disease means some of Micahs red blood cells are sickle-shaped, while some are round. The sickle cells die early, which causes a constant shortage of red blood cells, and when they travel through small blood vessels, they get stuck and clog the blood flow, according to the Centers for Disease Control and Prevention (CDC).

Micah stands with some of his fellow PS 29 students during the dance-a-thon, which took place last month. (Staten Island Advance/Annalise Knudson)

Some of my blood cells would be shaped like a moon, because that would be the sickle, and the other ones would be shaped like a doughnut, because thats the one that can get through my blood easier, Micah explained. But the ones with the moon, they get less oxygen and they sometimes clog up my blood. I had some stomach pain, and a lot of pain when I was little. I had some arm pain and some pain in my stomach and most times in my spleen.

The condition can cause pain and other serious complications like infection, acute chest syndrome and stroke.

The only therapy approved by the U.S. Food and Drug Administration (FDA) that may be able to cure sickle cell is a bone marrow or stem cell transplant, but those are very risky and can have serious side effects, including death, the CDC stated.

At that point, what we started talking about was the fact that a lot of kids who have sickle cell require blood transfusions, right? Its one of the especially since COVID its something that we are constantly seeing, that theres not enough in the blood supply. Couple that with the fact that sickle cell is pretty prevalent in the United States, said Zapata.

Im excited to dance and everything, Micah said. It makes me feel like sickle cell is getting more support for how it is hurting people, and I just want people to know its helping if you can donate." (Staten Island Advance/Annalise Knudson)

RAISING AWARENESS

Last school year, PS 29 spent a day teaching students about what sickle cell is and how it affects people. The plan to host an event for sickle cell awareness finally came to fruition last month.

On Sept. 30, the school made sure to raise awareness and funds to help those battling sickle cell. Students and staff alike were dressed in red some donning dance-a-thon shirts that read, Brave like Micah.

Throughout the school day, students in each grade made their way to the gymnasium to dance for nearly 30 minutes in the dance-a-thon, led by fifth-grade emcees who volunteered their time.

Im excited to dance and everything, Micah said. It makes me feel like sickle cell is getting more support for how it is hurting people, and I just want people to know its helping if you can donate.

Funds raised from the approximately 300 T-shirts that were sold as part of the dance-a-thon were donated to The Valerie Fund, a non-profit organization that has supported children with cancer and blood disorders since 1976.(Staten Island Advance/Annalise Knudson)

When the fourth-grade class went to the gymnasium, Micah was the first one to start dancing. Students around him joined in, as they danced to popular hits and line dances like the Cha-Cha Slide. Funds raised from the approximately 300 T-shirts that were sold were donated to The Valerie Fund, a non-profit organization that has supported children with cancer and blood disorders since 1976.

The Valerie Funds helps sickle cell awareness, spread the word. So everybody who sees this shirt or they see the videos weve been sending out on stuff, said Micah.

Micah has many friends who are part of The Valerie Fund and struggle with cancer and sickle cell including some who have since died from the diseases, his mother explained.

The school also partnered with the New York Blood Center to host a blood drive.

Anyone can donate to The Valerie Fund at http://www.thevaleriefund.org. Visit http://www.nybc.org/ to donate blood.

PS 29 also partnered with the New York Blood Center to host a blood drive. In this photo, Francie Scherma, a first-grade teacher, donates blood. (Staten Island Advance/Annalise Knudson)

AN ADVOCATE FOR HIMSELF AND OTHERS

Faure said she hopes that she and Micah continue to spread awareness of sickle cell. Micahs treatment is similar to children who have cancer he takes chemo daily. But he still remains upbeat, lively and bubbly.

Zapata noted that the school staff, including the school nurse, know the signs and keep an eye out for Micah if he feels ill at school.

And Micah is very, very good at advocating for himself ,so he lets us know when something is off or something isnt right, said Zapata. He even came to our PTA [parent teacher association] and told our PTA about sickle cell.

Beyond school, Micah has been a voice for those suffering with sickle cell. He has spoken with senators in New York and New Jersey and with other members of Congress to help pass bills for sickle cell, and promote awareness of the disease.

And Micah has big plans for his future he said he hopes to become president of the United States one day.

PS 29 in Castleton Corners held a dance-a-thon and blood drive for sickle cell anemia, which affects a 4th grader at the school, Micah Thomas. (Staten Island Advance/Annalise Knudson)

PS 29 in Castleton Corners held a dance-a-thon and blood drive for sickle cell anemia, which affects a 4th grader at the school, Micah Thomas. (Staten Island Advance/Annalise Knudson)

PS 29 in Castleton Corners held a dance-a-thon and blood drive for sickle cell anemia, which affects a 4th grader at the school, Micah Thomas. (Staten Island Advance/Annalise Knudson)

PS 29 in Castleton Corners held a dance-a-thon and blood drive for sickle cell anemia, which affects a 4th grader at the school, Micah Thomas. (Staten Island Advance/Annalise Knudson)

PS 29 in Castleton Corners held a dance-a-thon and blood drive for sickle cell anemia, which affects a 4th grader at the school, Micah Thomas. (Staten Island Advance/Annalise Knudson)

PS 29 in Castleton Corners held a dance-a-thon and blood drive for sickle cell anemia, which affects a 4th grader at the school, Micah Thomas. (Staten Island Advance/Annalise Knudson)

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S.I. school hosts dance-a-thon to support 9-year-old student with sickle cell disease - SILive.com