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Indiana girl is raising awareness about Sickle Cell Disease through her own experience

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Posted at 8:19 PM, Oct 07, 2021
and last updated 2021-10-07 21:41:39-04

INDIANAPOLIS — Even though Sickle Cell Awareness Month ended in September, one mom and her daughter want to make sure the discussion on Sickle Cell Disease doesn't end.

Seven-year-old Calina Jones-Mckinzie, also known as Lena, is full of life and it's hard not to smile when she's in the room.

Calina and her mom, Jeszma Jones, make the two hour drive to Riley Hospital for Children in Indianapolis every four to six months, and have done so for the last seven years.

"Why I'm here?" Lena asked. "I need to take a few tests...because I have Sickle Cell."

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Sickle Cell Disease is a hereditary blood disorder impacting some 100,000 in the United States. The Centers for Disease Control and Prevention estimates that the condition occurs among about one out of every 365 Black or African American births.

Lena was less than a week old when she was diagnosed.

The second-grader comes for check-ups with Dr. Seethal Jacob at the hospital's Sickle Cell clinic several times a year.

It's a place where Lena and Jeszma can meet with everyone from doctors to social workers to psychologists.

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"Our focus is to really care for the whole patient, the whole person, the whole family," Jacob said.

"I put my emotions on the back end so I can do what I need to do for her and mainly what I mean is advocate for her," Jones said. "Life is temporal. You may be here one day, you may not be here. Calina needs to know how to do it in case something happens to me."

Jones and the medical team at Riley Hospital hope Sickle Cell education and outreach continues so Hoosiers understand the depth of this disease.

"The more people that know, the more people that we can help," Jacob said.

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The comprehensive Sickle Cell clinic at Riley Hospital started two years ago. It sees more than 300 kids and teens from newborns to 22-years-old with a long-term focus of preparing patients with the transition into Sickle Cell adult care.

RELATED | Need for Black blood donors increasing to help patients with sickle cell disease

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