“I’d rather be her mom. I don’t want to be her doctor.”

Meet Aashni

Aashni lives with a mitochondrial disorder.

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Aashni Pletcher
Aashni Pletcher has an autosomal recessive genetic disorder which has caused her mitochondrial disease. Mitochondrial disorders affect every organ in the body. For Aashni, it has affected her in many ways, including very low energy, low muscle tone throughout, liver and eye issues, and an inability to eat by mouth. She gets all her nutrition through a gastrostomy tube (G-tube) directly into her stomach three times a day. "She has never wanted to eat. If you put food and water in front of her, she has no interest," says her mom, Aditi. (Photo: Deanne Fitzmaurice)
Aashni Pletcher
A kitchen drawer filled with Aashni's many medications. Currently, there is no cure for mitochondrial disorders, but Aashni takes vitamins and supplements to help her condition. (Photo: Deanne Fitzmaurice)
Aashni Pletcher
Jake Pletcher makes his daughter Aashni laugh. Aashni has developed glaucoma and cataracts, and has had two eye surgeries to have her lenses removed. She wears contact lenses every day to strengthen her vision. (Photo: Deanne Fitzmaurice)
Aashni Pletcher
Aashni's feedings take 2 to 3 hours each. Because she digests slowly, she can't tolerate excess air and easily spits up her food. She is "vented" after every two ounces by drawing out excess air through the G-tube and waiting for the food to settle into her stomach. Aashni's parents are both doctors. "I’d rather be her mom. I don’t want to be her doctor," says Aditi. (Photo: Deanne Fitzmaurice)
Aashni Pletcher
Aashni plays while her parents catch up on work on a Friday evening. (Photo: Deanne Fitzmaurice)
Aashni Pletcher
Jake makes his fourth phone call to a medical equipment company to tell them to redirect a $500 bill for Aashni's feeding supplies to Medi-Cal. One month's supply of her feeding tube formula costs $1,500. "We go through days and days of trying to deal with insurance companies and scheduling therapies," he says. "The biggest thing that would help would be cohesiveness. The billing people don't understand insurance and vice versa. There's no group to help us deal with insurance companies." (Photo: Deanne Fitzmaurice)
Aashni Pletcher
"Every night, Jake and I make a list of what we're going to tackle tomorrow," says Aditi. The couple says they spend 10 hours per week figuring out insurance and scheduling appointments. (Photo: Deanne Fitzmaurice)
Aashni Pletcher
The Pletcher's wall calendar reveals some of the many weekly goals or "homework" each therapist has for Aashni and the family. (Photo: Deanne Fitzmaurice)
Aashni Pletcher
Aashni takes one last feeding before bed because she no longer tolerates continuous feeding through the night. Her parents and her full-time nurse or nanny spend much of their hours at home feeding her. (Photo: Deanne Fitzmaurice)

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Aashni's care map
Aashni's “care map,” which illustrates the complicated web of medical care and coverage, as well as educational and support services needed for children with medical complexity and their families.