How to help
Ala Harbin has set up a GoFundMe account, gofundme.com/doitforD-Justus, to help with expenses related to a July 9-22 trip to National Jewish Health.
Djustus Cobb has a lot of dreams.
The Gainesville 6-year-old wants to be a cheerleader, a ballerina and a gymnast, but she has simple goals as well.
“I want to eat cake,” she said.
A lifetime of severe allergies, which produces painful eczema all over her body, has prevented Djustus from enjoying food, play or any kind of heightened activity.
“I wish I could take all that way from her and put it on me,” said Djustus’ mother, Ala Harbin. “I want her to enjoy her childhood.”
Help may be on the way. Harbin is planning to take Djustus in July to National Jewish Health, a Denver-based medical center that specializes in coordinated care for lung, heart and immune diseases.
“My biggest goal is to get some better understanding of her diagnosis,” Harbin said. “I want my child back.”
Djustus’ troubles began when she was about 1, with Harbin noticing bright red blotches on her face, similar to “clown circles.”
“She would scream like it was burning her face,” Harbin said.
She got some cream from the doctor, but “it just wasn’t working.”
After some medical tests, Harbin found out her daughter was allergic to eggs, nuts, dust mites, grass, pollen and “all kinds of environmental stuff.”
“Even the air and the sun don’t do her any good,” Harbin said.
She has asked doctors about stronger treatments than cream.
“They told me if they give her a higher dosage of medicine, it would affect her kidneys, with her being so young,” Harbin said.
The ordeal reached a peak when in Thanksgiving 2015, Djustus was hospitalized for 3-4 days after her hard scratching of eczema had developed into a staph infection.
“It put her out of school for two months,” Harbin said.
Djustus is on a regimen of infection-fighting antibiotics, as well as probiotics, live bacteria with health benefits, such as for the digestive system.
The medicines make for a tricky balance.
“If we calm her skin down, but she gets a cold, (the combination of medicines) makes her skin act back up,” Harbin said. “So, it’s like give and take with her.”
Djustus, who also suffers from asthma, gets breathing treatments at home and carries an EpiPen, which opens airways in her lungs.
The health struggles carry an emotional toll for mother and child.
Sometimes, Djustus tells her mother, “I just want the eczema to be gone.”
And when Harbin responds with tears, Djustus leans in and says, “Mama, it’s OK. God’s going to take it away,’” Harbin said.
“As a mother, you always think you need to fix everything,” she said. “You’re the doctor, you’re the counselor, the driver, nutritionist, dietician, I’m everything she needs. But I knew I couldn’t fix this.”
Prayer has kept her going, Harbin said.
And it was in a moment of seeking God that she began to search online for answers and found National Jewish Health.
While there, Djustus will be assigned a “care team.”
“She’ll have her own dietitian, she’ll go through education programs, she’ll get bathed properly and they’re going to retest her for allergies,” Harbin said. “I’ll be in education programs, as well.”
The experience will be tough financially, with costs around $13,500 for flights, the hotel stay and medical bills. Harbin has set up a GoFundMe page to help raise money.
“Once we get this straight, we’re going to have the biggest party,” Harbin said. “We’re going to have a buffet with every food you can eat.”
And she also hopes to share her experiences with other struggling families, perhaps turning her journal into a children’s book of some kind.
She keeps pictures on her phone showing the physical results of eczema on her daughter, but she has also kept notes — private thoughts and observations.
And they lovingly speak to Djustus and the ordeal she’s gone through.
In one writing, “You Are Brave,” she talks about her daughter’s courage.
“You are you are brave because you are different. You are brave because you are patient. You are brave because you are my hero and don’t even know it.
“You are brave because you shine in so many ways. You are brave because the love you have in your heart.”
In another writing, a letter to Djustus, she speaks about her child’s wisdom.
“The other day you said something that made so much sense,” Harbin writes. “You told me ‘Mama, I’m going to always dream big.’ For you to be that young and have so much ambition is the reason I go hard for you.”