Tamitria Jernigan takes her daughter Tashea to the Peyton Manning Children鈥檚 Hospital at St. Vincent鈥檚 in Indianapolis every three weeks for a blood transfusion. Tashea has a blood disorder known as sickle cell disease, and it caused her to have a stroke when she was two years old. The regular blood transfusions prevent her from having another one.
The trouble is when Tashea had the stroke, she was in Indiana鈥檚 Lake County, a place where few medical providers know how to handle sickle cell disease. A doctor from Indianapolis now to fill the gaps, but that care came too late for Jernigan and her daughter.
These days just leaving the house is a heroic feat because Tashea is wheelchair bound. Jernigan has to lift Tashea out of her bed into her wheelchair and from the wheelchair to the car. Tashea is only 42 pounds, but it still takes a toll on Jernigan鈥檚 arthritic knees.
They moved to Indianapolis from Lake County eight months ago for Tashea鈥檚 health. Jernigan followed her oldest daughter who recently started college at Purdue University in Indianapolis. But the move meant leaving behind two teenage daughters because of a custody battle. She still hopes to bring them to Indianapolis one day, but she couldn鈥檛 risk Tashea鈥檚 health any longer. Tashea almost died twice because she wasn鈥檛 getting proper care in Lake County.
鈥淎nd once we got here doctors appointments was just was falling in our lap,鈥� said Jernigan. Although she was homesick, Jernigan said she was happy to be in Indianapolis, 鈥渂ecause she (Tashea) was being neglected for so so so many years on her health.鈥�
Jernigan said she gave up on Lake County hospitals after they didn鈥檛 have blood ready for one of Tashea鈥檚 scheduled transfusions. Jernigan said her daughter can鈥檛 afford to miss a transfusion and risk another stroke because she might not survive.
For years, Jernigan took Tashea to Illinois for sickle cell treatment. A lot of families in Lake County do this because the care is better. But Tashea needed more than sickle cell care. She needed specialists to help her breathe, to help her gain weight and to make sure her medications didn鈥檛 damage her organs.
Jernigan said there was a cap on how much of Tashea鈥檚 medical care her Indiana insurance would cover out-of-state. Finally her doctor in Illinois told her she needed to move - either to Illinois or Indianapolis.
Jernigan chose Indianapolis to be close to her oldest daughter. Jernigan said she has already seen results 鈥渟he has not been hospitalized not once in eight months we鈥檝e been here.鈥� She said she posted the good news on her Facebook page, 鈥渂ecause she was going to the hospital every month when we was up in Lake.鈥�
Jernigan cobbled together Tashea鈥檚 care for nearly 15 years. She said she had no idea there were specialists that could help her daughter two hours south in Indianapolis, and the Lake County doctors never mentioned it. The out-of-state doctors made the referral.
鈥淪he never had a neurologist, a pulmonologist. She never had none of this,鈥� said Jernigan.
Tashea can鈥檛 talk. She can鈥檛 move. It鈥檚 because of the stroke she had when she was two years old. Jernigan remembers taking her daughter to the ER because she couldn鈥檛 breathe. She got worse and the doctors sent Tashea to an Illinois hospital.
Jernigan said goodbye to her daughter before she went home to get some rest. 鈥淪he鈥檚 like bye mom,鈥� Jernigan said those were her daughter鈥檚 last words.
The next day Tamitria learned Tashea had had a stroke. Jernigan said the doctors told her, 鈥渟he had the mentality of a newborn,鈥� and that she鈥檇 never be the same.
Doctor Emily Meier is Tashea鈥檚 hematologist in Indianapolis now. 鈥淚t鈥檚 a sad case because we don鈥檛 see very many kids like that anymore.鈥� She said Tashea鈥檚 case used to be the norm with children who have sickle cell disease. But treatment has improved over time. Now doctors start kids on a medication to prevent stroke earlier.
Jernigan knows things are different, but she said she still beats herself up. 鈥淚 tell the doctors I wish I had of came here before now,鈥� she said, remembering her daredevil daughter at two, pre-stroke. She used to ride her toy bike down the stairs, gobble pancakes and listen to her favorite song Get Low by Lil Jon and The East Side Boyz.
Meanwhile, Jernigan will soon find out if surgery can help straighten her daughter鈥檚 spine. After 15 years of just dealing with Tashea鈥檚 health issues, Jernigan has discovered an entire world of new medical options for her daughter and a new life for herself. In fact she鈥檚 started to date after a nine year hiatus, and she鈥檚 on the search for a Bruce Willis type. 鈥淭hat is my future husband,鈥� she laughed.
This story was produced by, a news collaborative covering public health.
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