WRNMMC, Bethesda, MD –
Paisley Minor is just 5 years old, but yet she is strong and talented. Her friendly smile brightens the room as she enters the prosthetics and orthopedics unit despite her struggle to walk.
Paisley is a double amputee who has had a total of seven surgeries. She is also battling several other medical conditions. She can only walk with the help of artificial limbs, but that does not stop her from being herself - happy, singing, smiling and sometimes running.
Tibial Hemimelia-Limb disease
Paisley was born in 2017 with a rare medical condition called Tibial Hemimelia Disease. It is a rare birth defect found in one of every one million live births. It causes a baby to have a partially or completely missing tibias, which is the large bone located below the knee (often called the shin bone). Her lower limbs were missing knees and most of their bones. As a result, Paisley did not have the body structure to allow for independent mobility.
USMC Major Paige Thomas and Paisley’s medical condition
Paisley’s mom is an active duty officer in the Marine Corps who has served in uniform for more than two decades. Maj Paige Thomas took part in several missions abroad in places such as Iraq, Afghanistan and South America. Thomas said she was full of excitement when she became pregnant for the first time, but 14 weeks later, she faced the threat of miscarriage. “Fortunately,” she said, “the child survived it.”
Not long after, Thomas underwent pregnancy scans when doctors told her that they were unable to locate all of her baby’s bones in the lower limbs and the feet appeared to be deformed. Paisley’s condition could not be fully or properly diagnosed until she was born. She was then categorized as a high-risk pregnant patient. “I did not know how to feel when I received the news, but as a strong woman of faith, I refused to terminate the pregnancy and was ready to face whatever challenge it presented, stating, “As a Marine, we adapt and overcome making the best out of any situation.”
Paisley in Colorado and Delaware
During her pregnancy and delivery, Thomas was stationed in Colorado. On the big day, she said, there were lots of specialists who anticipated a complicated labor event, but that was not the case and the process was not as problematic as they expected upfront. However, Paisley was born with lower limb deformities just as the doctors had predicted earlier. Thomas said the experience changed her “whole life.”
Making the tough decision
Thomas saw many specialists in numerous states leading up to the final decision to amputate Paisley’s lower legs. Starting in Colorado’s Rocky Mountain Hospital for Children, then to Utah’s Shriners Hospital and ultimately ending in Wilmington, Delaware at Alfred I DuPont Hospital for Children where Thomas was assigned on a Humanitarian Transfer to care for her then 2-year-old baby. All medical professionals confirmed Paisley’s rare medical condition.
Thomas was asked to choose one of two difficult options. The first, body reconstruction, which would require several major surgeries to “save the appearance” of her short and fragile limbs. Thomas was told even after this surgery, Paisley still would not be able to use her legs properly.
The second option was to allow Paisley’s legs to be amputated, but she would be able to walk with the help of artificial limbs.
Although both choices were painful, Thomas had to make the difficult call for her daughter.
“It was a tough decision to make, to give the go ahead for her legs to be amputated. Some of my friends said that was a conservative move. But I know I did what was in her best interest [because] that was the best thing to do based on professional consultation and spiritual reflection. I chose her quality of life, her ability to run, jump and play, as opposed to her sitting down for the rest of her life,” she said.
In 2019, in Wilmington, Delaware, 2-year-old Paisley had her legs amputated.
Thomas explained that as a mother, she personally felt she handled the situation better than most parents would have because of her life experience as a Marine, which involved making life and death decisions during war situations. According to Thomas, her decision was focused on Paisley’s life and her ability to make the most of it.
A WRNMMC beneficiary
Because of Paisley’s medical condition, Thomas’ military assignments are based on locations where her daughter has access to the best military medical support and care available. As a result, she was moved to Virginia and was connected to the Walter Reed National Military Medical Center’s prosthetics and orthopedics unit in 2020. On day one, Paisley, became “the new kid on the block.”
“The treatment has always been amazing. The reception is phenomenal. My daughter receives the best care and support from the nation’s finest medical personnel. Her artificial limbs and other services provided are top notch,” Thomas said.
“If Paisley breaks her artificial leg today or the next day, another one is ready. I am incredibly grateful to this hospital, she added.
Jaime Boehm is a certified prosthetic specialist at WRNMMC’s Prosthetics and Orthopedics Unit. She and other professionals have been treating Paisley for over two years. They also design various types and sizes of artificial limbs for her. “This kid is strong even though she is going through a lot,” Boehm said.
“The WRNMMC orthopedics unit prepares her artificial legs, using high technology combined with expertise to fit into her situation. We have ‘dynamic movement orthosis’ supported by sensory inputs to make her walk as comfortably as possible. We offer her the best as a military kid since we pride ourselves in being ‘the flagship of military medicine
,” Boehm said.
“What makes WRNMMC prosthetics unit the best is, it’s not based on the usual ‘red tape’ of health insurance which categorizes disability responses based on costs and subscriptions. We give our patients with special needs anything they require to make their movements comfortable. That means Paisley gets the best,” Boehm added.
Fears of discrimination
As Paisley slowly progresses out of preschool to kindergarten, Thomas has concerns about her daughter entering public school.
“For now, she is attending school on a military installation. But when she goes to kindergarten, she might be exposed to cruelty of those that have never been exposed to the world’s differences. Some kids might want to take advantage of her situation. Hence I am training her to be strong to be able to resist bullying,” Thomas said.
“I also teach her about her story. Like, ‘Paisley, where are your legs?’”
Paisley answered, with a smile, “I don’t have them, so they gave me these new ones so I can walk and run just like you.”
Thomas believes in the talents of her daughter and therefore refused using the word “disability.” She uses the term “all abilities” because Paisley has special needs with varying levels of strengths and abilities.
Paisley, now 5, participates in various sporting activities like ballet, soccer, gymnastics, swimming, and jujitsu, while her mom mostly acts as her coach. “This kid is strong and I don’t want her to waste that energy so I promote constructive outlets to help her channel her natural skills,” she said. “She might as well be the next U.S. Paralympic champion like Jessica Long. That’s my vison, that’s my commitment,” Thomas added.
Encouragement to Parents
Thomas’ hope is for parents who have kids with special needs to see them as “exceptional beings given to them by God for a reason. Those parents need to provide special care with love. That’s what I’m doing.”
The Marine mom has the option of employing a caretaker to help with Paisley, but so far Thomas has refused that option. “Being able to care for her on a daily basis gives me joy and hope,” she said. That’s why I wake up motivated every single day, looking forward to seeing her wonderful steps.”
For more on Paisley’s story click on this link