LA JOLLA–Children with spinal muscular atrophy (SMA) will be catching waves this Friday at La Jolla Shores for the 5th annual “Surf Away SMA With Ricochet” event.
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.
Some kids have a tracheostomy, a surgically created opening into the trachea that provides breathing assistance through a permanent ventilator. These kids have Type I SMA—the most severe and the most common. Other kids have type II SMA. these kids can typically sit up without help, though they may need assistance getting into a seated position, but they are unable to walk and will require a wheelchair. Individuals with Type III SMA are initially able to walk, but have increasingly limited mobility as they grow and eventually, many need to use a wheelchair.
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 will be attached to the surfboard to keep water from getting on the kids. 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 will be picked up going in and out of the water, as well as each time a wave comes close.
The board will be kept in shallow water, and when the crew is ready, the team leader will hold onto the back of the board and walk it to shore. The rest of the team will surround them to ensure safety.
Children who aren’t as severely disabled will be able to go without the chair, but safety is still the number one priority, so a skilled and experienced surfer will be on board too.
The surf session is sponsored by Ionis Pharmaceuticals, the maker of 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.
For a child with SMA, going from a chair full of medical gear to a surfboard full of cheer gives both the child and the parents the opportunity to do something they never thought possible.