At 4 years old, this little girl has spent more time in the hospital than out
The family of Serenity Toomer, a 4-year-old girl with a rare lung condition, has rearranged everyone’s lives to keep her safe. They could use a hand from you.
In her short time in this world, 4-year-old Serenity Toomer has spent more time in the hospital than out of it.
Serenity, who lives with her parents, Tiffany and Jermaine Toomer, in Homestead, was born with a rare condition called idiopathic pulmonary he
mosiderosis. It causes repeated bleeding into her lungs.
Already at risk of even the slightest illness potentially turning deadly, Serenity’s situation has grown even more perilous during the COVID-19 pandemic. Looking out for her health, her parents were forced to
reevaluate their work lives, and the other children in the house have had to home-school to lessen the chances of bringing infections back to their little sister.
“The lungs are in a constant state of low-grade
bleeding,” said Dr. Hani Fanous, a pediatric pulmonary fellow at the University of Miami’s Miller School of Medicine. Serenity is his patient.
While Serenity’s body is able to remove most of the blood, a large amount of iron from the blood is left behind, which can cause permanent lung damage, according to the National Institutes of Health.
Treating someone with the disease is extremely frustrating because there is no cure, and it is so rare that battling it with the correct course of action is difficult. There simply aren’t many cases for doctors to study.
“Maybe in a career, you see five to 10 cases,” Fanous said.
The condition leaves Serenity extremely vulnerable to illness. The most common of colds will send her back to the hospital for months.
“She’s not able to be around a lot of people, especially anyone who might be sick,” Tiffany Toomer, 38, said. “If she gets what they have, it puts her back in the hospital in critical condition.”
Serenity takes nine different medications and must be hooked up to oxygen while she is sleeping at night. Some of the drugs she takes must be administered intravenously, which her mother has become an expert at doing, Fanous said.
“Mom has been phenomenal,” he said. “Most parents cannot administer this medication at home, and she’s been just terrific.”
Even minor illnesses increase the risk her lungs will bleed. She then gets a fever, requiring her to receive more oxygen throughout the day, her mother said.
“And, depending on how much oxygen she needs, then we take her to the hospital,” Toomer said.
This in turn places a burden on Tiffany’s other children in the house — three boys ages 16, 18 and 22 and a 7-year-old daughter. While the 22-year-old is out of school, the others have been learning from home ever since the pandemic started last spring.
The sacrifice has become more necessary in the midst of the coronavirus pandemic.
The Toomers’ 18-yearold son Jeremy, who is in his last year at South Dade Senior High School, is affected the most. Missing out on all the traditional activities students enjoy in their senior year has been hard on him, but his mother said he gets why he can’t be among his peers.
“He wants to go, but I can’t afford to take the risk, especially with COVID,” she said. “It’s his last year, and he wants to experience all of it. He understands it’s just the sacrifice we have to take as a family.”
Serenity’s idiopathic pulmonary hemosiderosis was diagnosed when she was 1 1/2 years old. But she was born with other health difficulties, the most critical one being born premature. She weighed 1 pound, 5 ounces in August 2016, and it wasn’t until January 2017 that her family could bring her home.
“She goes through a lot,” Toomer said.
Unfortunately, her life isn’t expected to get any easier. Serenity is going to need a lung transplant before she reaches adulthood, Fanous said.
“There’s no way those lungs are going to carry her into her adult years,” he said.
But, like her parents, Serenity is mentally strong and always has a positive attitude. Despite her many challenges, she’s a happy little girl.
“She’s an absolute delight,” Fanous said. “She loves wearing her tiara. She turned me into a frog the other day, and I tried telling her it’s supposed to be the other way around, but she was very adamant.”
Keeping the home germfree is a burden the whole family has taken recently, and it has affected what Tiffany and Jermaine can do for a living.
Toomer was a manager at Starbuck’s in Cutler Bay, but quit this month. Not only was serving customers too risky in the age of COVID-19, but she said she needs to devote more time to Serenity.
Jermaine, 37, also recently stopped driving people for Lyft.
To earn income, the couple recently started a courier business, delivering medical supplies. With Jermaine is doing most of the driving, Tiffany is able to devote most of her time to Serenity.
“I like to keep her with me. I literally carry her with me everywhere,” she said. “She’s kind of like a hip.”
“I have less contact with people,” Toomer said.
But, with a fledgling business, raising five children, one of whom has severe health issues, the family can use some help.
Sherri Kelly, a social worker with the Miller School of Medicine, said the family is in need of many things. Chiefly, Serenity needs a laptop computer or tablet so she can go to school online. Since she cannot go in-person at all, her school has not provided a device.
The family also could use a bedroom set since they are all sleeping on mattresses on the floor.
Donations of food, toys and gift cards as the holidays approach would also be greatly appreciated,
Kelly said, as would gas cards, since the Toomers regularly drive from Homestead to Holtz Children’s Hospital in Miami.
“We would love to give Serenity and her family a special holiday season because this family treats each holiday like it could be the last,” Kelly said.
But most of all, Toomer said, she wants her youngest daughter to become healthy.
“I just want her to grow up and have a life,” Toomer said. “I just want her to be
happy.”
HOW TO HELP
Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. For information, call 305-3762906 or email wishbook@miamiherald.com. (The most requested items are often laptops and tablet for school, furniture, and accessible vans) Read more at MiamiHerald.com/wishbook.