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4-year-old donates bone marrow to his little brothers



It was barely sunrise and Michael DeMasi Jr. raged through the corridors of a children's hospital in Philadelphia, balancing on a red line engraved in the floor design and telling his mother to tie him a balloon so he could "fly."

The 4-year-old boy imagined a true superhero wearing a blue T-shirt with photos of his four-month-old twin brothers born with a rare immune deficiency [196592002] Michael's little brothers – Santino, "Sonny" and Giovanni, "Gio" – needed a bone marrow transplant, and when his parents told him he was a donor match, Michael told them that he wanted to rescue his brothers and

"Hey, Michael," his mother, Robin Pownall shouted when she filmed her young son on a Thursday morning in March and headed her through the Children's Hospital of Philadelphia (CHOP). 1

9659002] "Jaaaaah?" He replied, leaning back to let her catch

"Are you ready to go?" his mother asked.

"Yay!" he said, pumping his fists and jumping up and down.

"Where are you going?" she asked him. [196592002] "To save my little brothers," he said.

"To save your little brothers?" She repeated. "You are the best."

The preschooler knew what would happen, his mother said – a long needle would be squeezed into the bone near his hip to extract the marrow, then the cells would be transplanted into his brothers

He did it anyway.

And later that day, when his brothers received the stem cell infusion, Michael was there to watch, jump and shout, "This is my bone marrow! This is my bone marrow!" Said his mother.

Almost two months after the procedure, the twins were released from the hospital last week. Her mother posted a video on Facebook with Michael wearing a superhero T-shirt smiling between his little brothers.

"I saved you," said the preschooler. "It's time to go home."

Santino and Giovanni were born in October with Chronic Granulomatous Disease (CGD), an immune disorder in which the immune system is not functioning properly, meaning that even a common cold could be life-threatening. Her mother told the Washington Post. She and her fiancé, Michael DeMasi, were already familiar with the condition. Her eldest son, Dominick, 9, was also born with CGD and they knew it was a possibility that her other children were born with the disease.

Following his diagnosis just weeks after his birth, Dominick was placed on a transplant list and received stem cells from the umbilical cord of a donor. He is now considered cured, his mother said.

When the twins discovered CGD, Michael, who was not born with the disease, was tested and found to be consistent. His parents talked to their doctors about the risks, such as pain and pain and complications from anesthetics, then sat down with Michael and tried to explain.

Michael knew that his little brothers were ill and he knew they needed bone marrow. He also knew that he had been tested to see if he was a match, his mother said.

When his parents told him he was, he exclaimed, "I'm the prank? I'm the game?" Pownall recalled.

His parents asked him if he wanted to get away with the donation.

"We were right on -" There's going to be a big needle in your back, bud. "Pownall said she told him. "We asked him," Do you want to do that? If you are afraid, you do not have to.

Pownall said her son had asked if his marrow would allow his little brothers to come home.

She said yes.

He said, "Good.

Pownall said her son told her he wanted to "help my little brothers".

But Pownall said the decision was not easy – she and her fiancé took the option and wondered if Michael understood what it was all about and if it was right to ask him at all.

"Part of me was like," Well, he's 4. Maybe he does not know what's going on. "But he did, and he was all in favor," she said. However, Pownall said, "We were not in any way, shape or form that would push anything." She said that Michael and his dad would have set the twins to the bone if Michael had hesitated to register. But doctors told them that bone marrow was the best choice for a suitable family member. It was amazing – he is so proud, such a brave little guy. "

She added that the doctors at the hospital sat with Michael and made sure that he understood and agreed.

Art Caplan, a professor of bioethics and head of the Department of Medical Ethics at the New York University School of Medicine, said situations where children are the donors are ethical issues, namely, whether a child really understand the risks and give their permission – a principle known as consent.

In addition, Caplan said, there could be risks for the donor – pain or other complications, and in cases where the transplant is unsuccessful, the donor may need to do it again or blame himself if the donation fails Helps or the recipient has a serious problem. He said that before such procedures are performed, it is hoped that an ethics committee will review the circumstances to ensure that there are no risks to the donor that the parents do not consider.

But in general: "I tend to allow" It happens, "he said, provided that the stakeholders understand and accept the risks.

It is unclear whether CHOP had an investigation of the case by an ethics committee. A spokeswoman for the hospital said she could not comment on Michael's case, and when asked if CHOP needed an ethics committee to weigh up situations with child donors, she said she could not confirm that.

March 8th marched Michael

His mother had told him that he would be "a real superhero," and the little boy who loved Captain America as much as Spider-Man, Batman, and Superman. She was excited to join her ranks.

The nurse told him that she would give him some "muggy juice" and he would go to sleep, his mother recalled.

Then Pownall was taken to a waiting room where she sat she said, she was worried and thought of her little son. "I thought it would be harder for him than it was," she said.

"He is so small," she added. "You do not want your babies to be in pain."

Micheal woke up with little welts on his back, but insisted that he was not in pain, his mother said.

Pownall posted a video after his procedure, showing Michael with blue popsicles all over his face. "I have a blue tongue," he said, holding her out for the camera. "Because my popsicle was blue."

Hours later, the four-year-old jumped up and down, watching his bone marrow go to work.

The Kindertante wrote on a GoFundMe page that Michael and his brothers were fine.

"Michael performed his procedure this morning so they could remove the bone marrow cells," the message says. "He's perfectly healthy, plays and everything went by like nothing Giovanni got the bone marrow cells around 2:30 pm, and Sonny got the bone marrow cells around 5:30 pm Both babies are fine and they are sleeping Now it's time for their bodies to heal with the new bone marrow cells to build a healthy immune system. "

She wrote an update last week, saying the transplants are successful and the twins are at home.

Pownall said that now the twins, who are nearly 7 months old, show no signs of chronic granulomatous disease, although their doctors are watching them closely.

Michael, for his part, told the post in a brief, distracted conversation that he felt "good" about helping his brothers.

The Post: "Hello Michael, my name is Lindsey and I'm a reporter."

Michael: "WHAT ?!"

Pownall: "She's a reporter."

Michael: "Oh . "

The Post: "Can you tell me what you did for your little brothers?"

Michael: "I saved her because I'm a super hero!"

The Post: "How did you do that?"

(Michael leaves the phone)

Pownall: "Michael, what did you give them?"

Mic hael: "Bone marrow!"

The Post: "Did she do better?"

Michael: "Yes."

The Post: "How are you feeling?"

Michael: "Good."

The Post: "Are you happy that you're home now?"

Michael: "Yes."


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