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news News Wednesday, March 11, 2020 Wednesday, March 11, 2020 11:41 AM - Wednesday, March 11, 2020 11:41 AM

Meet Reni

Prosthetic legs made a radical change in experiencing No Limits!

Meet Reni

When a family decides to go through the adoption process, several decisions have to be made prior to being matched with a potential child. One of those decisions is the medical condition(s) of the child. The list of potential medical conditions is long and can be overwhelming.

“Initially, we had not considered the possibility of adopting a child with a limb difference. However, his file was presented to us directly and we felt a strong sense that he was to be our son,” said Cydil, Reni's mom.

Reni was born in Albania and was adopted by his parents when he was 12 months old. When he was born, he was diagnosed with amniotic band syndrome. His legs stopped developing in the womb, and he is considered a congenital bilateral above the knee amputee.

“One of our close friends, Faith Powers, works at Lexington Shriners Medical Center. We knew that many of her patients had spina bifida, but when sharing about the possibility of adopting Reni, she informed us that Shriners Hospitals in Lexington also treated children with limb differences like Reni,” said Cydil. “It felt like one of those pieces of confirmation that we were to proceed with Reni’s adoption – that God had provided the resources a child like Reni might need... and practically in our back yard! Before we were even formally approved by the adoption committee in Albania, we attended the Lexington Shriners Hospital open house and immediately felt welcomed and comfortable with their care for kids and quality of service.”

Janet Walker, M.D., pediatric orthopaedic surgeon, suggested that Reni be fit for his prosthetic legs when he was 14 months old. Up to that point, Reni was very mobile without using any kind of prosthetics and his parents were able to carry him when needed.

Efforts to move him into prosthetic legs did not proceeded as expected. He took some bad falls that left him fearful and resistant. Reni’s parents decided that it was best to not force Reni into using the legs, but wait until he was able to voice his own desire.

When he was 2, Reni started to become very innovative in his mobility and independence. His parents noticed how resourceful he was at building his own “legs” with materials around the house. It was because of Reni’s ingenuity that his parents approached Dr. Walker about fitting Reni with stubbies.

“Stubby prostheses are a viable option to consider in bilateral above-the-knee amputee patients, as they offer advantages in the areas of safety, stability and energy efficiency,” said Dr. Walker “They are short, nonarticulated pylon prostheses and a good training tool to help with progression into full-length prosthetic legs later down the road.”

Shortly after Reni’s fourth birthday, his family moved to Albania to serve as missionaries, but continued to travel to Lexington, Kentucky, to visit Dr. Walker every other summer and have Reni fit for new stubby prostheses.

“The stubbies, which we started calling his “boots," revolutionized Reni’s access to playing outside,” Cydil stated.

Reni continued to wear his “boots” until his 10th birthday. Reni is an active boy, and the anti-skid treads on the bottom of the stubby prostheses were wearing off on a frequent basis. They were also hot and heavy, and made it more difficult for Reni to keep up with his peers. His parents noticed that Reni was quickly fatigued, and they needed to push him in a stroller when walking longer distances, which was much to the chagrin of Reni!

Prior to returning to America for their doctor’s appointment with Dr. Walker in 2019, Reni and his parents had a frank conversation about allowing Eric Miller, CPO/LP, manager of the orthotic and prosthetic department, to add feet to the bottom of his new set of stubby prostheses.

“We explained that it would be much easier for us to replace a pair of shoes than replace tread on his boots,” said Cydil. “We knew he still harbored fear about a sudden change in height and center of gravity, but the clincher was we told him that with feet he might be able to snowboard – and we don’t even ski!”

Eric proposed to Reni that a pair of dynamic feet would enhance Reni’s range of motion both forward and backward, as well as laterally, while also reducing any added impact to his hips. Reni agreed to allow Eric to add the feet to his stubby prostheses, and during his next fitting visit at Shriners Medical Center he quickly learned how much had changed in his ability to experience regular life.

“Within minutes of wearing his new sockets and feet, Reni was five inches taller and cruising around, so much more was now within his reach!” explained Cydil. “A few weeks later, we were traveling to Texas and it was the first time in nine years that we didn’t travel with a stroller! While he could probably still use the assistance from the stroller for extended walks, he has so far refused it and just takes a few rests here or there.”

For the first time in Reni’s life he is able to go to his friends’ homes without one of his parents pushing him there in a stroller. With this newfound freedom, Reni has fully integrated into his village community as his own self! “Reni always had confidence and a desire to be independent, but his freedom used to have a lot of limits. From exploring items on store shelves to seeing exhibits in museums – before he was dependent on someone else to get him where he wanted to go and/or lifting him high enough to see what he wanted to see. Now he relishes the joy of going where he wants to go, when he wants to go there,” Cydil said.

Reni’s life is not without continued challenges. Due to his short stature and shorter length prosthetic legs, he still experiences disappointments like being unable to ride a roller coaster or go down slides at a water park. He still cannot run as fast as other kids run or play certain sports. On the other side of that disappointment is a lot of happiness and positivity. Reni has a gift for inspiring people and educating those with whom he comes in contact. He has met many people along his journey, including several wounded warriors. Reni, who is now 10, continues follow-up care with Dr. Walker and is an inspiration to the Lexington Shriners Medical Center staff every time he visits.

Reni on playgroundReni in physical therapy