Completing Amanda
Amanda Smith's life is a meager one that doesn't offer much in the way of material excess. A rare genetic disease continues to play havoc with her body, even after it already robbed her of three limbs. And Amanda's mother, friend and supporter — Denise Scheu — died from cancer a year-and-a-half ago leaving Amanda to raise her then 5-year-old son, Leland, by herself.
Fast forward to today.
The Mount Vernon, Indiana, woman is now also a mother to 2-month-old Ashley Denise, who she named after both her sister, Ashley, and mother, Denise. Her daughter's birth, like Leland's, was uncharted territory. Doctors say Amanda may be the only patient with the disease to successfully give birth... and she's done it twice.
A tickle fight breaks out between Leland, 6, and Amanda as he tries to watch videos on her cell phone.
The apartment complex where Amanda and Leland live turns into a playground as soon as school lets out in October of 2017. The family moved back into the same place they had lived with Amanda's mom before she died earlier in the year.
Filling a syringe with Amoxicillin proves a messy and challenging proposition for Amanda as she prepares Leland's dose before he heads to school. Childproof caps add to the difficulties Amanda faces with her condition.
Leland Smith, 5, offers his services to retrieve something from his great aunt's refrigerator for his mom, Amanda, in June of 2017. Amanda Smith uses a motorized wheelchair which makes it difficult to reach items on top of the appliance.
Amanda tries to get Leland ready for school after having to rip the covers off him to get him moving in September of 2017. It is hard enough getting a kid out of bed in the morning, but when it is still dark outside, it only makes it a greater challenge.
Now in kindergarten, Leland waits for the school bus with the other neighborhood kids. The first day of school was rough on Leland and it wasn't until day three that he got onto the bus voluntarily – after a bribe of a McDonald's visit for a Happy Meal later that evening.
Leland and Amanda visit an old high school friend's place in a nearby apartment after making a trip to McDonald's for a Happy Meal. Leland shared his French fries with Layla Null, 4.
Amanda Smith tries to get comfortable on her couch 36 weeks into her second pregnancy in September of 2018. She still has a slow-healing scab on her forehead from a fall from her wheelchair and an emergency trip to the hospital a month before. The inability to feel pain makes the smallest scratch, cut or burn a possible life-threatening condition.
Ashley Denise Smith is placed on her mom, Amanda's, belly after she was born at Indiana University Health Methodist Hospital on Sept. 21, 2018. Because of Amanda's inability to feel pain, doctors weren't sure when or if she would feel labor pains – as well as a myriad of other possible complications – so Ashley was delivered by Cesarean section in Indianapolis.
Leland, 6, sees his new baby sister for the first time as his mom, Amanda, arrives home from the hospital Monday afternoon, Sept. 24, 2018. Amanda's aunt, Rosanna Funkhouser, provided the pushing power into their Mount Vernon, Ind., apartment. Amanda and Leland spent a couple of months at Aunt Rosanna's country home after Amanda's mom died.
Amanda puts Ashley down for a nap after a diaper change as big brother Leland, 6, prepares his after school snack before settling in to his new sister's baby carrier to watch television.
Amanda feels like her family is now complete with the addition of Ashley Denise. Leland, 6, is enjoying being a big brother... mostly.