Here's the latest news from Surf Dog Ricochet, who will be featuring in our August episode:
Tracheostomies and breathing tubes don’t stop these kids!
Surf Dog Ricochet and kids with spinal muscular atrophy (SMA) caught waves last week during the 4th 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. The diagnosis comes with words no parent ever wants to hear…"No treatment, no cure."
Some kids like Bailey, have a tracheostomy, a surgically created opening into the trachea that provides breathing assistance via a permanent ventilator. Bailey has 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.
Lauren has Type III SMA. Individuals affected by this type 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!!
Ricochet takes her job very seriously. First she checks in with the baby to make sure he's ok. Check...
Then she checks in with the water team to make sure everything is in order. Check...
Everything checked out... lets surf!
A bath chair was 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 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.
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.
water team is always on the ready to prevent a wipe out.
Once the surfer gains enough confidence, they're ready to go without Ricochet. However, Ricochet continued to feel responsible for Lauren. She refused to leave the beach until Lauren was out of the water, and in front of her.
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.
For a child with SMA, going from a chair 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.
Thanks to Ricochet, and an incredible team of skilled volunteers, the kids got a thrill of a lifetime, as you can see by a thumb's up, and beaming smile from Gia!
Please get on board, and join Ricochet in raising awareness of SMA by sharing this uplifting story of children who have a spirit much stronger than the body that houses it. Thanks for your support.