Chaney Roko watches TV in their living room with her two adopted daughters, Kiera, 4, and Mary, 9. Most of their time is spent in the living room. Each evening before bedtime, Chaney gets to have relaxation time with the kids by watching a movie in the living room. Mary and Kiera have Arthrogryposis Multiplex Congenita, a rare neuromuscular disease that bends the joints at birth. They cannot walk, speak, or eat on their own because of the disease. Growing up, Chaney's family adopted a young girl who also had AMC. She died at a young age due to complications from the disease. Chaney found a special bond while taking care of her handicapped sibling and decided that she would adopt medically fragile kids. In order to be a full-time mother and care giver to her kids, Chaney had to quit her job. Although she has no time to date or socialize, she loves spending quality time with her kids, whether it's homeschooling or watching their favorite movies together. She wants to move out of her two-story home into a ranch in order to accommodate to her kid's needs, however she faces financial issues that prevent that from occurring anytime soon.
Chaney carries Mary playfully through their home on Oct. 19, 2014. In the wintertime, it is hard for Chaney to take her kids outside so, for fun, Chaney likes to carry Mary around the house and tell her she is flying.
A look at the medical supplies used to feed Mary and Kiera Roko. Each day, Chaney cleans the previously used tubes with alcohol to keep them sanitary. Because they are unable to consume food on their own, they must be fed water based food through a tube.
Chaney watches Kiera after waking up from a nap on Oct. 19, 2014 inside their home in East Rochester, N.Y. Sometimes Chaney takes a nap on the couch with her daughter, instead of on the floor of the living room.
Chaney holds Kiera during a series of back muscle spasms on Oct. 19, 2014 in East Rochester, N.Y. Chaney is upset because Kiera is unable to move her body due to her medical condition. The muscle spasms force her body to shake, sometimes for several minutes each time.
Chaney covers Mary with blankets before leaving the CP Rochester and their aquatics therapy center on December 12, 2014 in Henrietta, N.Y. Because Mary has little control over her lower body, she must be thoroughly dressed to compensate for the cold weather outside.
Chaney watches as Mary learns how to walk during an aquatic therapy session inside CP Rochester and their aquatics therapy on Dec. 12, 2014 in Henrietta, N.Y. Each month, Chaney takes Mary to aquatic therapy to help re-vitalize the damaged joints in Mary's lower body. When Mary was adopted, doctors said that she would never be able to walk. Through physical therapy, she has been able to walk with the help of her mother. The sessions, which last 30 minutes are a moment of relief for Chaney, who has to constantly attend to her daughter's medical needs.
Isabella Sprague, 8, left, says "Merry Christmas" to Mary during the East Rochester Holliday festival at East Rochester High School on Dec. 13, 2014. Isabella is a friend of Mary, and they have occasional play dates together.
Chaney, her mother, Karen, along with Mary and Kiera, listen to Marcy Reeves read to elementary school students as part of the East Rochester Holliday festival at East Rochester High School on Dec. 13, 2014. During the holidays, the local high school hosts a series of public shows and events performed by high school staff and students alike. The free reading sessions allow Chaney to get the kids out of the house. Chaney's mother, Karen is visiting for a few months and is a major help when taking care of the kids.
Mary (left) lays on the living room floor next to her sister, Keira in the Roko family home in East Rochester, N.Y. On quiet days, Chaney likes to put the girls on the floor so they can see the TV or watch their mother when she reads to them.
Chaney pushes Mary up the driveway with the help of her mother Karen, on Lincoln Street in East Rochester, N.Y. The winter conditions in Rochester make it especially difficult for the children to get around in their wheelchairs. Chaney needed her mother's help to push the wheelchair up their steep driveway.
Chaney supports Mary while she stands in her leg braces. Each day, Chaney has her daughter stand on her own for several minutes to promote stronger joints in Mary's lower body. Eventually, Mary will have enough strength in her lower body to begin walking small distances on her own.
Chaney watches over her Kiera as she takes a nap on the family room floor. Letting the children nap during the day allows Chaney to take advantage of the free time to watch television without tending to her daughters.
Chaney carries Kiera to bed on Oct. 19, 2014 in East Rochester, N.Y. Each night after Chaney puts the girls to sleep, she sets up a baby monitor to hear if they need to have their lungs suctioned. Because of the AMC disease, the girls have trouble breathing on their own.
Chaney waves goodnight to Mary before she goes to bed on Dec. 15, 2014 in East Rochester, N.Y. Each night before Mary goes to bed, Chaney uses a suction tube to clear out Mary's lungs so she can breathe well while sleeping.
After a long day of taking care of her children, Chaney relaxes on her family room couch. Each night she has a few hours alone to relax until the night nurse comes to monitor the children while they sleep.