The Evans Family Story

 

Rykien Evans has been a fighter since day one, explains his mother, Amber. “A routine ultrasound at 17 weeks revealed that our son had alife-threatening condition—something no parent-to-be is ever prepared to hear,” says Amber. After genetic testing, it was revealed that Rykien had Arthrogryposis—meaning he would be born with joint contractures, making it difficult for joints to move and grow normally. While the Evans family was devastated by their son’s diagnosis, they found some relief in knowing that the condition is congenital—meaning it cannot be passed on to future children through the parent’s genetic makeup.


The Evans family was prepared for the worst and had to have difficult conversations with their prenatal care team to determine what next steps would be once Rykien arrived. “We knew our son would have to be placed in the Neonatal Intensive Care Unit (NICU) following birth and we anticipated that it would be for a long time,” says Amber. “However, when Rykien arrived he surprised everyone—including the medical staff— he was prepared to fight this battle and was quickly moved from the NICU to a step-down unit.”


“We knew this would be a lifelong journey for our family,” says Amber. “We spent hours upon hours researching our son’s condition and were determined to do everything we could to provide our son with a happy, healthy, and fulfilling life.” Doctors in the family’s home state of Utah encouraged the Evans to consider leg amputation, but the Evans family was determined to find another solution—a solution that existed in Philadelphia at Shriners Hospitals for Children. Around Rykien’s first birthday, the family traveled to Philadelphia for their initial meeting with doctors to discuss treatment for their son. “We received a lengthy plan of serial castings to increase the range of motion in Rykien’s joints and learned he would have to undergo multiple painful surgeries that involved cutting through the bone to improve how the joints line up and to change bone position,” says Amber. As anyone can imagine, this information was difficult for Rykien’s parents to digest, but it also instilled in them a sense of hope for the first time and they knew it was the right move to come to Philadelphia.


Ready to start the long process of correcting Rykien’s condition, the Evans family packed their bags and traveled to Philadelphia to stay at the Philadelphia Ronald McDonald House at Front & Erie. That initial stay was in 2012 and the family has stayed at the House 12 times since—all for various lengths of time.
“The House is such a great environment. There are friendly people, wonderful home-cooked meals, and it’s clean and inviting,” says Amber.


Not only does the House provide basic amenities such as a clean room to sleep in and meals, but it provides parents and children alike with opportunities to unplug from the monotony of the hospital setting by hosting an array of events like pet, music, and art therapy. “The art therapy allows us to interact as a family—something I’m very grateful for,” says Amber. And while Amber appreciates the bonding experience that art therapy provides to her and her family, Rykien is like most fiveyear-olds and prefers watching movies in the theater and playing songs on the jukebox while singing and dancing along.


The Ronald McDonald House provides support tailored to parents and children—making it a truly special place. “We call the House our ‘second home’,” says Amber. “In fact, when we arrive at the airport, I always tell Rykien that we’ve arrived in Philadelphia. He insists that we have not… until we pull through the gate at the House, at which time he announces, ‘Okay, now we’re in Philadelphia. My second home’.”
His second home indeed, Rykien celebrated his 5th birthday at the Front & Erie House this past February. “It was so special. We came down to dinner and the entire dining room was decorated for him. There was a cake and presents and everyone sang Happy Birthday to him,” says Amber. With a heart full of gratitude, Amber says, “We just can’t thank the House enough.”


While the Evans family’s gratitude is palpable, it’s Rykien’s infectious smile and positive attitude towards all that he does, despite the challenges he faces on a daily basis, that brings joy not only to his family, but to the entire House and the other guests at Front & Erie. The family is currently making plans to complete an important surgery this year—a surgery that will enable Rykien to walk on his own—a feat that this little fighter has been working towards all his life and a feat that the Ronald McDonald House has no doubt he will accomplish. Thank you, Evans family, for allowing us to be a part of your journey.

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