Local dad Daniel Romney remembers that his wife, Shari, knew that something was “off” with their son’s health from the beginning.
“When he was born, he wasn’t breathing,” he recalls. “The nurses soon resuscitated him and told us that everything was fine. Despite the nurses’ assurances, Shari had the gut feeling that something wasn’t right. While still in the delivery room, she repeated that something was wrong so many times that I double-checked all Nixon’s fingers and toes. Nixon’s hearing test was the first sign that Shari’s instincts were right. Nixon failed the initial test, as well as two additional ones. Afterward, the audiologist informed us that Nixon was profoundly deaf.”
This was only the start of a myriad of devastating health diagnoses. At 7 months old, Nixon was diagnosed with cerebral palsy. At 14 months old, in an effort to qualify for cochlear implants so he could hear, a CT scan revealed that Nixon had significant brain damage and, initially, a physician refused to qualify him for the cochlear implants. Eventually, thanks to their tireless advocacy, Nixon did receive the implants—which vastly improved his quality of life.
“Unfortunately, Nixon’s diagnoses continued to get worse,” Romney says. “We were told he might possibly have a brain deterioration disease—it’s something we still worry about. As Nixon went through more tests, we learned that he’s one of 21 people in the world who have a rare duplication in one of his genes, called 7Q33. He also has autism. Over the years, he’s had six surgeries, including two surgeries that rotated his thigh and shin bones to help him walk.”
Despite his obstacles, Romney shares that Nixon, now 12, has exceeded doctors’ and their own expectations. While he is mostly non-verbal, he can communicate what he wants through other means (for example, taking a parent’s hand and leading them to what he needs), and he can walk. He also, his parents share, has a loving and gentle personality—sometimes even mischievous—with the occasional hugs for therapists and loved ones.
From 2010-2014, Romney says that the family kept waiting to qualify for different therapies, but kept being waitlisted. Nixon loved the water, so they took him to Big Surf and decided to learn how to surf together as a father-son activity. The change in Nixon was immediate, with Romney remembering having to drag him out of Big Surf. Because of this, the nonprofit Surfing with Nixon was born.
Surfing with Nixon, according to Romney, gives kids with autism in Arizona and Mexico a chance to surf as a form of water therapy. Surfing gives the kids sensory input, and teaches them to control their bodies in and out of the water and, at the same time, brings families together who are dealing with similar experiences, cites the organization.
The nonprofit accomplishes this through two annual events—one every March in Mexico, and one every August at Big Surf in the East Valley. Unfortunately, due to COVID-19, there is not an event happening this month locally, but the organization is still raising funds to provide swag bags to the children who would have participated. It does this with the monetary support of many companies in the surf industry, as well as support from local businesses.
“It’s obviously really hard not to have an event this year,” Romney says. He adds that they hope to have an event in March 2021 in Mexico and be back locally in August 2021.
Since 2014, Romney says that the nonprofit has impacted 2,000 kids who were able to experience surfing for free (at the local event, Big Surf is rented out for the day). Professional surfers and swimmers such as Clay Marzo, Curt Harper, Amy Bilquist, and Josh Kerr, among others, have supported the nonprofit. A lot of big name surfing brands also help to fund the efforts.
“A lot of kids with special needs like autism don’t get the sensory input that they need,” Romney shares. “Through experiences like surfing therapy, kids get new sensory input and can focus and enjoy. Their lives often change immediately. While we specialize in autism, the event is open to kids with all types of disabilities who would benefit from this type of therapy.
“I have to give all of the credit for Nixon’s successes to him and my wife—she, like many special needs parents, is doing all she can to make sure he has everything he needs day-in and day-out,” he adds.
Romney says that, although there is no event this month, Surfing with Nixon can always use monetary donations and volunteers to help. To learn more, visit SurfingWithNixon.org.