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Editor’s Note: In this column, neuromyelitis optica spectrum disorder (NMOSD) columnist Teaira Daniels reflects on the loss of her daughter, Amariyah, who passed away from Pompe disease.

My daughter Amariyah LaTrice was 5 months old when she was diagnosed with Pompe disease. I took her into my local hospital’s emergency room (ER) on New Year’s Eve 2007 because she wasn’t feeling well and was very congested. My baby was given a chest x-ray and it showed a shadow on her heart, which was enlarged. 

She was then given an electrocardiogram (EKG) and the doctor in the ER recognized the heart rhythm and knew my baby had Pompe disease. It was confirmed the next day.

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I was 22 years old. Prior to that moment, my major in school was communications/broadcasting. The health profession was far from my knowledge base but I knew that I was going to learn beyond what I needed to know so I could provide the best care for my baby girl.

The genetics department at Cincinnati Children’s Hospital in Ohio hadn’t had any new diagnosis of Pompe disease since the clinical trials for the first-ever treatment in 2002. So they were watching and learning from my baby girl who was diagnosed quite early.

She passed away July 1, 2009, from Pompe disease, just 13 days shy of turning 2 years old.

Read about the diagnosis of Pompe

After having a meeting the day after Memorial Day 2009 with Amariyah’s team of doctors, they determined she started having antibodies after the infusion she got every 2 weeks. They explained they developed a treatment that could work for her and, if it helped, it would be called Amariyah’s protocol and would be given to future patients with Pompe disease.

However, I had to approve the treatment. Her doctor explained I had time since she was doing well. They didn’t want her to catch something that would be hard for her to recover from.

I never got to make that decision. A week later, Amariyah suddenly got sick and was immediately admitted. Three days later, she was in the intensive care unit (ICU) and had to be intubated. My baby fought hard. She was still her bossy self, watching her favorite shows. But I knew she was tired. I was not leaving my baby’s side. I slept right next to her. I was as strong as I could be for both of us. My mom was also by both of our sides.

After being in the hospital for 3 weeks, I had another care meeting when I had to decide to let my baby pass naturally because I was told she would not be able to breathe on her own but we would try to see. I held her as the doctor pulled the breathing tube out and she took her last breath.

It’s been 13 years since my living angel, my heart outside of my body, became my angel in heaven. There is not a day that goes by that I don’t think about Amariyah. She is my only child and I miss her so much.

My experience with my baby and her being diagnosed with a rare disease prepared me for my diagnosis with NMOSD, another rare disease.

Amariyah’s birthday is July 14. She would have turned 15 years old and every therapy visit I have for my rare disease, I think of my baby and how I would take her to physical therapy twice a week.

She is my motivation and I just want Amariyah to be proud of her mom.