My daughter was diagnosed with a blood disease when I was just learning English. I want to help other families in our situation.

• Amna Ibrahim immigrated to the US from Sudan.
• After her daughter got a diagnosis of sickle-cell disease, Ibrahim relocated to access better care.

This as-told-to essay is based on a conversation with Kelly Burch, and it has been edited for length and clarity.

When my daughter Jude was born 2 1/2 years ago, she seemed like a perfect baby. She cried heartily and ate well, so I assumed she was a healthy newborn.

Like most babies, Jude got a newborn screening, a blood test that looks for various diseases. That's how I learned that Jude had sickle-cell disease.

I had heard of SCD before. It's common in people whose heritage is from sub-Saharan Africa. My husband and I had immigrated to the United States from Sudan. I'd never considered that we could both be carriers.

Jude's diagnosis pushed me into learning more — and now helping other families like mine going through scary medical diagnoses in a language that is not their own.

Becoming a resource for Jude

When the geneticist told us that this was an inherited disease, sadness washed over me. It was as if he were saying, "You did this. You gave your daughter this illness."

To make matters worse, I had a hard time understanding everything the doctors were saying to me. I had been in the United States for only two years, and English is not my first language. But I knew I had no choice but to learn about this disease, for Jude. My daughter needed me.

That's when I started asking for any resources I could get. The doctors gave me a stack of books, and I took all the nurse's time asking questions. I started to realize that Jude wasn't going to necessarily have the worst-case scenario. I was determined to learn how to advocate for her care.

Another move

Despite that, Jude was very sick. When she was 4 months old, a cold left her hospitalized for an entire week. She had her first blood transfusion. Over the next two months she was hospitalized two more times.

The medical team in our home in Nebraska was supportive, but they weren't treating many kids with SCD. I wanted Jude to be somewhere more familiar with SCD. I needed to look at other parents and children with this disease and see that they were living full, healthy lives. I needed another mother to hold my hand and say, "I have a child like Jude, and he's a normal kid."

When Jude was 6 months old we moved from Nebraska to Seattle. The city had good job prospects for my husband and, even more importantly, great care for Jude at Seattle Children's Odessa Brown Children's Clinic, which has a special sickle-cell-disease program.

Stepping into advocacy

We arrived in Seattle, and the first thing I did was ask about a family support group. Unfortunately this was during the COVID-19 pandemic, so all groups were on hold. Still, the treatment team was able to connect me with other families.

That's when I knew I wanted to give back.

In Sudan I had done some work in disease prevention. This spring I am completing prerequisites, and in the fall I will start working toward an epidemiology degree. Taking classes in English is scary, but I tell myself I don't have to be perfect, I just need to understand.

Through my mosque I've already taken on the role of educating families about vaccination and COVID-19. I want to be a resource for families like mine who are navigating a scary medical situation in a language that isn't their native tongue.

Recently I had spring break. I was able to spend more time with Jude, who hasn't been hospitalized since our move to Seattle. She's thriving, babbling in both English and Arabic. We're in a safe place, and I want to help other families get there too.