Born May 2013 | Phoenix, AZ
Living with XLMTM
As parents to a boy with MTM we have learned a lot. But I don't like having knowledge and not being able to share it with someone else who really needs it... We have a lot of respect for other families who are doing this too.” - Daniel
In circles they go, like two planets orbiting the same sun; four-year-old Will, on his bicycle with training wheels, learning to balance, while Ryan, two-and-a-half, scoots around in his bright-green and black electric Jeep. Robin and Daniel, the boys' parents, strategically dodge the ever-encircling duo. In moments of close proximity or near misses, the family laughs, a silent smile exploding on Ryan’s face, delighted with their game.
“Ultimately we're going to make the Jeep steerable for Ryan,” says Daniel confidently, who customized the vehicle to suit Ryan’s needs. In an at-home engineering feat to help his son develop ambulatory skills and experience the outdoors, Daniel crafted a raised platform inside the Jeep, complete with brackets so that Ryan’s stroller-seat locks in, giving him a comfortable and secure ride. A rack on the back holds his ventilator and an ultra-sensitive button rests at arm level for the young driver to operate the gas. To ensure Ryan's safety, Daniel also designed a remote “kill switch” that he uses to stop the vehicle whenever Ryan is set on a collision course.
Ryan was born with Myotubular Myopathy (MTM), a rare disorder characterized by muscle weakness, reduced muscle pressure and tone, that results in a lack of mobility and respiratory issues. Beyond MTM, Ryan has additional diagnoses, which affect his blood and brain function. Despite the severity of Ryan's condition, which requires around-the-clock care, Robin and Daniel have adapted and excelled as parents in a challenging situation. They have utilized their skills, Robin as an engineer, and Daniel as a software developer, to improve Ryan's quality of life, keeping him out of the hospital and at home, where he can do what he does best—play, learn, and be happy.
“When you've never had the opportunity to walk or crawl, you know life no other way than just being on the floor and having other people move you around,” explains Daniel. Having adapted toys to teach basic motor skills functions as extremely useful therapy for Ryan’s physical and mental development. In Daniel's words, “The fastest way to learn is to just do it, and do it often.” Daniel’s knack for customizing toys is preparing Ryan for such things, he hopes, as eventually controlling his own electronic wheelchair. Using adaptive toys to connect with others is illuminating Ryan's unique charm. “There's a person trapped in a broken body,” says Daniel. “You don't really understand much about that person because you don't see them doing anything, but once you get to know them you see there is a personality there. These toys are a way of unlocking that. It's getting to who Ryan is and actually being able to interact with him.”
“His drumset is his favorite,” says Robin smiling as the bemused two-and-a-half-year-old plays with a small, electronic drum kit. “He just loves the cymbal.” It's true, Ryan is nailing the electric cymbal over and over again, with precision. They recently rigged a pair of finger cymbals to hang from a banana holder, secured with trach ties, repurposing Ryan’s old medical equipment. The instrument is small enough that even with his relative lack of strength Ryan can make quite a racket. Music to his family's ears. “Now he's trying to make noise [with his mouth]. That's huge progress!”
In their situation, even antagonistic behavior is a sign of positive development. When Ryan tries to push his big brother Will out of the way, Robin is elated by the refreshing sense of normalcy. “This is sibling rivalry,” she laughs. “My kids are fighting and I'm cheering them on!” Despite, the occasional brotherly banter, Will shows a definitive love for his brother. “At night after mommy and daddy get a kiss goodnight, Ryan also gets a kiss goodnight.”
Daniel and Robin do have some dreams of sharing their passion for adapted toys with other families, but have concerns. “The one group of people you don't want to charge for this, are the people who really need it,” says Robin. They hope to find a way to make toys available without having families pay out of pocket. “The money is out there for this stuff,” says Daniel. “We just have to find out where.”
But for now, Ryan is continuing to enjoy his Jeep and the time spent with family and supportive neighbors on their quiet cul-de-sac in the suburbs of Phoenix. Daniel teases Ryan a bit, by holding down the kill switch to disengage the Jeep while Ryan is pushing the button to go. Ryan continues pushing but nothing happens, a sign of irritation on his face. “What’s the matter buddy,” Daniel chides. “You need dad to fix it?” And with a magic rub of the giant green button, brings the Jeep back to life. Robin shakes her head at the display. “I have to be his hero somehow,” retorts Daniel grinning. “You're always his hero,” she says looking at him sweetly. “You're mine.”