3-year-old born with rare blood disease has to get monthly blood transfusions

One Arizona family calls the Phoenix Children's Hospital their second home. That's because every month, they have to drive to the hospital from Casa Grande, so their 3-year-old son can be given a life-saving blood transfusion.

Nathan Johnson has an extremely rare blood disease. His family said it is so rare, that only one other person in medical history that has had this condition. On Thursday, Nathan will turn three, but he has already had 45 blood transfusions.

Nathan's rare blood disease is a type of Hemolytic Anemia.

"His body is making immature red blood cells, and then they're breaking apart rapidly," said Nathan's mother April Macak. "So rather than lasting 30 days like a normal person, his red blood cells last about seven days."

The disease means Nathan has to has to undergo a blood transfusion at PCH, on a monthly basis. It's something Nathan will have to do, for the rest of his life.

"In some ways, this is a worse diagnosis than Cancer because you need lifelong transfusions," said Dr. Sanjay Shah, Nathan's doctor at PCH. "When you have life-long transfusions, it creates too much iron in your body, and then you need treatment for chelating iron out of the body."

For Macak, a single mother of four who lives off of a server's salary, she's taking it all in stride, and she's doing all she can to help her son.

"It's difficult," said Macak. "I wish I could take his place for him, sad it's hard on him, and he knows every time we get to the parking lot, he knows he has to get a pokey, and it's the only thing that he's known. It's hard on him too."

Nathan Johnson's GoFundMe

Blood Drive for Nathan Johnson
Christopher Lawyer's Eagle Scout Blood Drive In Honor of Nathan Johnson
Mondo Anaya Community Center (1487 N. Crane St., Casa Grande)
August 26