Silas Swint, 25, one of Amaria’s older brothers and her full-time overnight nurse, administers medication around 2 a.m. as she sleeps on May 5, 2023. Silas works as his sisters nurse five days a week and administers her midd-of-the-night medication doses and monitors her oxygen and heart rate as she sleeps
“I was ruining the time that I had”
When 15-year-old Amaria Granger received a diagnosis of Neimann-Pick type C—a rare, fatal neurodegenerative disorder—nearly six years ago, her mother, Mandy Baxter, exhausted financial resources exploring every possible avenue to slow down its progression. Known as "childhood Alzheimer’s," the disease lacks a cure, yet Mandy spent years attempting various treatments to save her daughter. They even faced a period of homelessness after participating in an experimental drug trial, requiring frequent trips from Pueblo, Colo., to Chicago every two weeks in the hope of slowing the disease's progress. Unfortunately, nothing proved effective.
Mandy’s hopes rose, again, in 2020, when she read that researchers were studying Niemann-Pick as a part of the search for a Covid-19 vaccine. When nothing came to fruition, and she realized how much time they had lost to the pandemic, her mindset began to change.
More and more, her mind kept drifting back to a conversation she’d had with a more-seasoned Niemann-Pick mom soon after Amaria was diagnosed.
This mother no longer called an ambulance at every seizure or pursued every clinical trial. She wasn't engaging in all the activities Mandy was. As time passed and Amaria continued to progress, Mandy grasped the rationale behind her approach. She recognized the moment when quantity became the adversary of quality, shifting her focus from extending Amaria's life to enhancing the quality of the life she has left.
Now, with the assistance of her twin sons, Silas and Marcus Swint, 25, they fulfill all of Amaria's home health needs and strive to provide her with as many meaningful experiences as possible during this time.
Amaria’s stepfather Phillip Potter feeds her from her favorite spot on the couch as her brother Silas and her mother Mandy Baxter catch up on her recent symptoms and medication doses on May 4, 2023, at their home in Pueblo, Colo.
With help from Perla Valdovinos, center, Mandy bathes Amaria before bed. Valdovinos, who has a background in healthcare and is the longtime girlfriend of Silas, took on the roll of helping care for Amaria in the evenings last fall.
Phillip cleans and fills Amaria’s feeding tube. Amaria regularly chokes on her food. Later in 2023, Mandy finally had to make the decision to move her strictly to a liquid diet, something she avoided as long as she could.
Silas checks Amaria’s vitals shortly after arriving for his nursing shift at Mandy’s house. The time Silas spends working as Amaria’s overnight nurse is Mandy’s only break from caring for Amaria.
Amaria’s dress for her prom-themed birthday party in 2022 hangs in the doorway of her bedroom next to a whiteboard listing her medications, dates she’s had seizures and other important medical information.
Mandy and Phillip help Amaria try on dresses for her 14th birthday party.
Mandy styles Amaria’s hair before her birthday party.
Amaria has her first dance with Chase Hart and a little help from Phillip before being crowned prom queen at her red carpet prom-themed 14th birthday party. A group of teens from a local high school came to the party to give Amaria a more authentic prom experience
Marcus Swint, one of Amaria’s older brothers, lays his head on her chest and cries after she is put to bed. One of the few ways Amaria can still communicate is by touch, her family members often lie their heads on her chest and shoulders and she will run her hands over their hair or hold their face in her hands.
Mandy unloads bags of Amaria’s medication. Due to the side effects of Niemann-Pick, Amaria is on an array of medications that have to be scheduled and administered in a specific order and very specific times.
Mandy administers medication through Amaria’s gastrostomy tube while they wait for their flight to Las Vegas to take off.
Amaria holds Phillip’s hand on the train taking them to the exit of the Harry Reid International Airport.
Mandy, Phillip and Silas check Amaria’s heart rate as she recovers from a seizure in a Denny’s on the Las Vegas Strip.
Mandy becomes emotional as they arrive in Las Vegas in April 2023.
Mandy gets Amaria a fortune that reads “Time is the most valuable currency. You will never be able to get lost time back or buy more. Spend it wisely, my friend …” and begins to cry.
Mandy Baxter, left, and Amaria Granger look up at The Mirage’s volcano show in Las Vegas on April 13, 2023. Before Granger lost her ability to speak, she shared dreams of seeing New York, the Statue of Liberty and Eiffel Tower. With limited funds and difficulty traveling, Baxter knew that seeing the real monuments wasn’t an option, so the family embarked on a weekend trip to Vegas to show Amaria the world.
Mandy and Phillip adjust Amaria in her wheelchair as she comes out of a partial seizure on the Las Vegas Strip. Before Amaira lost her ability to speak, she shared dreams of seeing New York, the Statue of Liberty and Eiffel Tower. With limited funds and difficulty traveling, Mandy knew that seeing the real monuments wasn’t an option, so the family embarked on a weekend trip to Vegas to show Amaria the world.
Mandy tries to get a reaction out of Amaria as they was a performance at the Circus Circus Hotel in Las Vegas.
Mandy Baxter hugs Amaria Granger as she gives her medication through a gastronomy tube on the sidewalk of the Las Vegas Strip as Phillip looks out at the city.