For 11-year-old girl Kynedi Young of Dallas, her normal is a lot different than others.
It includes up to half a dozen trips to the hospital every year.
Young was born with one of the most invasive and chronic forms of sickle cell disease, an inherited blood disorder in which the hemoglobin is damaged and can't carry oxygen to the tissues.
She was diagnosed as an infant but the scariest moments were at the end of 2020, when she began to experience rare and unexpected complications that are not usually found in children with sickle cell disease.
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She ended up in the hospital for 30 days and was intubated for 17 due to liver hepatopathy from complications of a splenectomy she had earlier in the year.
"It did scare me, not being able to eat for days," Young said.
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Today, however, she is thriving.
"As a mom, it is so rewarding to see how determined and resilient she is," said Young's mother, Britani Weems.
The inherited disorder affects about 100,000 people in the U.S.
Typically diagnosed at about six months of age, it can cause pain, anemia, swelling and delayed growth. However, Weems wants families to know the journey can look different for everyone.
"Sickle cell disease, in any of its nature, even on a good day, can still be very complicated," said Weems. "I want families to know that you will see the other side of the pain, that there is so much joy inside of the children."
It's been two years since Kynedi's last hospital stay, though she has a structured care plan including medication and monthly labs.
"I feel amazing and I just am happy that I'm not in the hospital anymore," she said.
September is Sickle Cell Awareness Month.
