Kids hit the lineup with breathing tubes and watchful entourage
Surfersvillage Global Surf News, 24 August, 2017 - Surf Dog Ricochet and kids with spinal muscular atrophy (SMA) surfed last week at a special surf session created especially for them. SMA is a disease that robs individuals of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to hold their head up, stand, sit, crawl, walk, swallow food effectively, or breathe. It is the number one genetic cause of death for infants. The diagnosis comes with words no parent ever wants to hear…"No treatment, no cure."
Some kids like Neil, even have a tracheostomy, a surgically created opening into the trachea that provides breathing assistance via a permanent ventilator. Neil’s father held his breathing machine as he ran alongside the board
When Riley was diagnosed with SMA, her mother Joanna Sommerville was already pregnant with her second daughter, Bailey who has type I SMA -- the most severe and common. Doctors listed all the things these sisters would not be able to do, saying they would only grow weaker over time with eventual organ shut down. “It was devastating. It’s really hard when both of your kids are facing a terminal disease,” Sommerville said.
But the Sommerville’s chose to look at each day as if it was their last, to embrace it and to enjoy every moment with their girls. Their goal has never been to have them be alive -- just to be alive, but to actually enjoy life for however long they're here. As such, the focus turned squarely on helping Riley and Bailey do everything people said they couldn’t.
“When someone at first says your child can't do something, and then they do it, it's just awesome… I don't really think I can put the feeling into words." Sommerville said.
Although these kids have difficulty performing the basic functions of life, SMA does not affect their ability to think, learn, have hopes and dreams or… surf with a dog!!
A bath chair was attached to the surfboard to keep water from getting on the kids. 15 month old, General was the youngest child Ricochet has ever surfed with.
Having children who are profoundly disabled takes the utmost expertise of the water safety team. Getting water into the opening of a tracheostomy could cause aspiration pneumonia. With this in mind, the board was picked up going in and out of the water, as well as each time a wave came close.
The board was kept in shallow water, and when the crew was ready, the team leader held onto the back of the board and walked it to shore. The rest of the team surrounded them to ensure safety.
Once the board came to a stop, it was again picked up by the team. This protocol keeps water from getting onto the child, while still providing the thrilling experience of surfing with Ricochet.
Children who aren’t as severely disabled were able to go without the chair, but safety was still the number one priority, so a skilled and experienced surfer was on board too.
For a child with SMA, going from a stroller full of gear to a surfboard full of cheer gives both the child and the parents the opportunity to do something they never thought possible.
The surf session also celebrated a new drug called Spinraza that was recently approved to treat this debilitating and terminal disease. Significant improvement has been seen in the survival of infants. It has also improved motor function in some children, helping them sit, stand and even walk.