La Quinta mom fights for inclusivity of son with terminal disability

A La Quinta family is staying hopeful after one of their children was diagnosed with a rare condition known as LMNA-Congenital Muscular Dystrophy, or LMNA-CMD.

“We’ve been fighting for his testing for years now and thankfully finally got the official diagnosis on the 18th of November,” said Cassidy Sipe, as she shared details about her 5-year-old son Benji’s health journey. 

In 2019, Benji injured his ankle while getting off the couch. His parents would eventually learn that the incident was a symptom of his rare and severe condition.

At the time, however, Benji’s pediatrician told the family Benji’s injury was normal, and that it was just him learning how to walk. 

It wasn’t until Cassidy had her third child that she decided to switch all three of her children to a different doctor, who then urged the family to take Benji to specialists at Loma Linda University Medical Center. 

Benji's mother has credited that second opinion for providing their family with clarity on their son's health.

Benji’s condition is so rare that there are no cures or treatments. His family is focused on ensuring he lives a comfortable and fulfilling life. 

“All we can do is keep pushing with his therapies and keep him as stable as possible to keep it from going quickly because there is no cure. It’s very rare,” said Benji’s mom, Cassidy Sipe.

She explained that one of Benji’s favorite activities is going to La Quinta Park. Last August, the City installed an accessible swing there to accommodate children with physical disabilities. 

“Inclusiveness in our community is really needed,” said Sipe. 

Now, Benji’s family is crowdfunding to purchase a converted wheelchair van to accommodate the constant travel to Benji’s doctor’s appointments from the Coachella Valley to Loma Linda.