One-year-old Amaya has caudal regression syndrome (CRS), a rare disorder which affects how the lower part of the body develops in the womb. Mum Jaylynn Stringer, 26, and dad Chris Ramsey, 28, found out their daughter would be born without legs during the 20-week scan.
The tot arrived via c-section on December 17 2021, at East Tennessee Children's Hospital, weighing 8lbs 9oz. Doctors discovered she had one non-functioning foot attached to her hip - which needed amputating at just three weeks old.
She underwent a total of seven surgeries and was finally able to go home after two months on the neonatal ward. Despite the difficult start to life, Jaylynn said her little girl is "full of personality" and able to crawl like other children her age.
The mum-of-two said people often ask about her daughter's condition, and she tries to "educate" people on her TikTok page.
Jaylynn, who is from Knoxville, Tennessee, said: "Amaya is not suffering, not in pain, she’s alive, and living her best life.
“Even with other kids her age, she crawls around and plays as much as she can. If she wants something across the room, she does whatever she can to get it.
“It’s nice having people coming up to me and educating them on what to do. Everybody is so fascinated with her. I’m so thankful.
“She’s so sassy, so stubborn, but also very determined — she’s a fighter.” Jaylynn and dad Chris, an operations manager for a moving company, were overjoyed to find out they were expecting their second child in May 2021.
But grew concerned when she was diagnosed with CRS, which also affects the size and shape of the chest, leading to breathing problems. She said: “I had a breakdown in the doctor’s office.
“I knew I was high-risk, having high blood pressure and type 1 diabetes, it was terrifying.” During the pregnancy, Jaylynn stopped working as a dispatcher for an alarm company due to constant doctors' appointments and struggles with her mental health.
Doctors performed a planned C-section at 38-weeks due to the baby's weight and height developing too quickly. Amaya arrived not breathing, so she was rushed to the neonatal ward for further treatment.
Jaylynn said: “I panicked when I saw her, without any colour, not moving, and with a tube down her throat to help her breath. I was crying, afraid, and didn’t know what was going on.
“They immediately prepared us for a long stay in the hospital.” Over the next few days, tests revealed Amaya had health conditions including a cleft palette, hearing loss and an underdeveloped jaw.
She underwent seven surgical procedures including a mandibular distraction - which involved inserting a device to lengthen her jaw. During this four-hour procedure, Amaya lost so much blood the doctors were forced to perform a blood transfusion.
She was also fitted with a hearing aid and a feeding tube into the stomach. Jaylynn added: “You can never be prepared for any surgeries, it’s a long process every single time.
“The whole time I was trying to keep it together, and I had a lot of support, but we couldn’t have any visitors because of Covid — the doctors and nurses were all we had.” After a total of two months in the hospital the little girl was finally able to go home with her parents and big sister Ariah, nine.
Jaylynn said she has had amazing support from her family while trying to navigate life with a disabled child. She also set up a TikTok account called @missamaya_ to spread awareness about Amaya's condition.
Through it, she has connected with mums whose children were born with physical and mental disabilities. She added: “There are many days when I felt I couldn’t do it, but I pushed through, so you can do it too.
“I know it looks scary, but it’ll be okay." She receives lots of positive comments, but Jaylynn also encounters some negativity online from people who suggest she should have terminated her pregnancy.
She said: “I’ve cried over comments before. People say terrible things to me and sometimes they just catch you on a bad day."
Amaya has no more procedures planned and no longer relies on her G-tube and eats regular foods. The family still worries about the future, and how she will be seen as she grows older.
Despite this, Jaylynn is very optimistic and hopes Amaya can be an example to other children and their parents. Jaylynn said: “I’m scared for how people will treat her, that has always been a worry of mine.
"There are people with disabilities who have done and achieved so much more than abled-bodied people. Her body doesn’t define her.”
