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Armani Drakes, who is just shy of being 9 months old, has spent her entire life in the neonatal intensive care unit at Children’s Hospital of Wisconsin with a disease so rare it doesn’t have a name.

Armani’s mom, April Drakes, gave birth to Armani at 28 weeks, but her body had only developed to 26 weeks. Despite having one lung, a heart on the wrong side of her body, and veins so narrow that her blood has difficulty flowing from her heart to her lung, she’s a happy child.

“She is constantly smiling and everyone at the hospital is in love with her. They fight over who will take care of her,” April said.

Doctors uncertain of Armani’s prognosis

The doctors told April the night Armani was born that they didn’t know if she would even be born alive. But this would be the first of many points throughout Armani’s life where doctors just really didn’t know if she would make it.

Having a child born so physically broken has mortified for April because she thought she would be able to bring a healthy child home with her, but she’s also realizing how strong Armani’s spirit has become.

“This is the first child they’ve taken care of with this condition,” April said. “Her heart rate is better and she reacts to the different things they are doing to her.”

Since her birth, she has had several surgeries to reconstruct her airway, fix her heart and veins. Her last surgery on March 11 improved her condition dramatically.

But April, who has five other children, said she and her husband have struggled financially.

“There are medical costs, and transportation and lodging costs,” she said.

For the first two months, April never left the hospital and there have been times when she would get a phone call from hospital staff that told her to get there as soon as they could.

“I’ve been very involved in medical decisions and the staff at the hospital have been great,” April said. “They’ve been transparent.”

A connection made

Former Racine native Monika McMillian, who lives in Kansas City now, said she can relate to April’s uncertainty over Armani’s condition. Last year her son Drew Witherspoon was hospitalized with a sinus infection that went into his brain. Drew was 18-years-old at the time when he had to have three brain surgeries that ultimately resulted in the left side of his body paralyzed. A single mom, McMillian’s friends and family put together a benefit in Racine last year called #Pray4Drew.

“And he got better, but he still has seizures,” McMillian said.

Having gone through the experience of having to cope with the financial hardship of Drew’s medical issues, McMillian was inspired by the help she received from others during the benefit and she wanted to do the same for someone else.

“I didn’t want to just let this die and I want to help other families by being a blessing to someone else,” McMillian said.

A stranger’s help

McMillian set up a Facebook page for the event and explained to the community that she wanted to help others, which is how she met April because she knew Armani’s godmother.

“I know how I felt being in her position,” McMillian said. “I was there and I know how it feels to not know if your child is going to live or die.”

Now McMillian is hosting a benefit concert for Armani with the help from Rapcine.com, an online hip hop website, from 3 to 6 p.m. on Saturday, April 4 at the George Bray Neighborhood Center, 924 Center St.

“I feel like I have the support of the community, and I have the support of a good group of friends,” April said. “I’m grateful.”

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Denise Lockwood has an extensive background in traditional and non-traditional media. She has written for Patch.com, the Milwaukee Business Journal, Milwaukee Magazine and the Kenosha News.