Amna was overjoyed when she became pregnant in 2019. She had moved to the United States from Sudan the year before and was eager to start a family with her husband.
Jude was born in Omaha, Neb. later that year. Shortly after, a newborn screening test revealed Jude had sickle cell disease, a genetic disorder in which red blood cells can block oxygen to any part of the body.
Patients with sickle cell disease can experience severe pain, are vulnerable to infections and can develop many life-threatening conditions.
Amna was devastated. “It was so hard for me to accept Jude’s diagnosis, but I knew I had to take care of her the best I could.”
Amna did everything possible to help her daughter, including researching sickle cell disease care centers around the country. She learned Seattle Children’s has more experience caring for children with sickle cell disease than any other program in the Pacific Northwest.
Meanwhile, in Omaha, Jude’s health was deteriorating. At four months, she caught a cold from a playmate and developed a high fever. She had to be hospitalized for a week and had her first blood transfusion. Two months later, Jude had to be hospitalized again due to problems with her spleen.
“I started crying,” Amna remembers. “I could see what this disease was costing my daughter. I felt like she was dying in front of my eyes.”
That’s when Amna decided to move across the country so Jude could receive care at Seattle Children’s Odessa Brown Children’s Clinic and the hospital’s Cancer and Blood Disorders Center. It wasn’t easy. Amna was still learning to speak English, their family and community was in Omaha and it was March 2020 and the COVID-19 pandemic was becoming more serious.
Amna’s husband initially got a job working with a trucking company, but a few months into the pandemic he was laid off.
Thankfully, a social worker at OBCC stepped in to share community resources that could help. Jude’s family received food, diapers and four months of rent. Seattle Children’s Uncompensated Care Fund covered the cost of their medical care.
At the same time, sickle cell disease specialists at OBCC found a medication that changed Jude’s life. She grew significantly, had less pain and swelling and was energetic enough to run and play. Jude has not been hospitalized since starting the treatment nearly two years ago.
“When we first came to Seattle, I had no one,” Amna says. “If I cried, there weren’t any shoulders to cry on. But Children’s cared about my situation. Now, all the people who work in the Odessa Brown Children’s Clinic, they are my family.”
As Jude’s health improved, Amna was able to go back to school and is working towards a bachelor’s degree in epidemiology. She uses her education to help other Arabic-speaking families who have children with sickle cell disease.
“When the doctor told me Jude had sickle cell I thought ‘My life is going to stop here,’” Amna says. “Now, I see how strong we are. Jude is growing and I am growing with her. We wouldn’t be where we are without Seattle Children’s.”
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