Meet Ronin Capps

Ronin Capps is a two-year-old from East Texas who has already accomplished more than his family once knew would be possible. His journey began shortly after birth when low oxygen levels led to a stay in the NICU. Doctors soon discovered that Ronin could not safely eat by mouth because he was aspirating. After 14 days at his local hospital, he was transferred to a higher-level NICU, and it would be 37 days altogether before his family was finally able to bring him home.

During those first weeks, Ronin's parents received several diagnoses and learned about different medical issues he was facing, but they still didn't have an explanation that connected everything. Although MRI results provided some information, an official diagnosis of Moebius syndrome did not come until Ronin was around four months old. It was actually his speech therapist, who was working with him on feeding therapy, who first suggested Moebius syndrome. Once she did, the pieces began to fall into place.

Ronin has been through a great deal medically in his first two years. His first surgery was the placement of a G-tube when he was barely a month old, a decision his mother, Haley, remembers as one of the hardest she had to make. Since then, Ronin has undergone palate repair surgery, strabismus surgery, multiple Botox injections for his eyes, and most recently the removal of his tonsils and adenoids because of severe obstructive sleep apnea.

There were times when what doctors told the family about Ronin's future was frightening, but Ronin began showing everyone just how much he was capable of doing. He worked hard through his therapies and eventually reached a milestone that once seemed a long way off: he no longer needed his G-tube. He also learned to walk before his first birthday. Although he remains developmentally delayed for his age and continues to work on different skills, he makes progress every day. Haley says he has completely blown everyone away with how much he has accomplished.

Away from doctors, surgeries and therapy, Ronin is very much an active two-year-old. He attends daycare during the week, where he enjoys playing with his friends and receives speech therapy. At home, he has three older siblings who absolutely adore him. According to his mom, they spoil him rotten, play with him and are usually willing to get him just about anything he wants. He also has cousins close to his age and loves spending time and playing with them. Ronin is surrounded by a family that loves him, with Mom and Dad proudly serving as his biggest fans.

Ronin especially loves cars and just about anything with wheels. He enjoys riding his bike outside, painting, playing with his siblings and cousins, and spending time with his dog, Max. But one of his greatest loves is food. Ronin loves to eat, something that carries special meaning considering that his earliest months were spent unable to safely eat by mouth and relying on a G-tube.

There are still frustrating moments. Ronin needs eye drops throughout the day, something he definitely does not enjoy. Communication can also be difficult for him, and there are times when not being able to express what he wants causes frustration. His communication continues to improve, however, and his mom describes him overall as a very happy little boy.

Through everything Ronin has experienced, Haley has learned something she hopes other parents will remember: see the child before the diagnosis. She encourages parents to treat their children as normally as possible and not allow a diagnosis or medical challenges to prevent them from going places, playing, having toys, and experiencing childhood. She also believes strongly in talking to children even when they cannot respond, making sure they remain included and know that someone is communicating with them.

Haley also knows that other people's reactions can sometimes be difficult. Her advice to families is to try not to allow those reactions to determine how they see their child or what they believe their child can accomplish. “You were blessed by this absolutely amazing person,” she says, “and no matter what struggles they'll face now or in the future, you be their biggest fan.”

For Haley, being Ronin's mother is exactly that—a blessing. She acknowledges that the struggles can sometimes be incredibly hard, but those difficult moments are balanced by watching her son accomplish things that once seemed uncertain. At only two years old, Ronin has already faced surgeries, therapies, medical challenges and developmental delays, yet he continues moving forward.

Haley is amazed by him every day. She believes the challenges associated with his disability will also help Ronin develop a strength that many people may never fully understand. And after seeing how much he has already accomplished in just two years, his family is excited to see where that strength takes him next.