La Quinta’s family remains hopeful after one of their children was diagnosed with a rare condition known as LMNA Congenital Muscular Dystrophy (LMNA-CMD).
“We’ve been fighting for years to get tested for him, but thankfully we finally got an official diagnosis on November 18th,” said Cassidy Sipe, referring to her 5-year-old son Benji’s. We shared details about our health journey.
In 2019, Benji injured his ankle while getting off the couch. His parents eventually learned that the incident was a symptom of his rare and severe condition.
But at the time, Benjie’s pediatrician told the family that Benjie’s injuries were normal and that he was just learning how to walk.
Until Cassidy had her third child, she decided to switch all three children to different doctors, urging the family to take Benji to a specialist at Loma Linda University Medical Center.
Benjy’s mother believes the second opinion has provided clarity to the family about her son’s health.
Benji’s condition is so rare that there is no cure or cure. His family focuses on ensuring he has a comfortable and fulfilling life.
“All we can do is push his treatment forward and keep him as stable as possible so that he doesn’t progress too quickly due to lack of treatment. It’s very unusual,” said Cassidy Sipe, Benji’s mom. said.
She explained that one of Benji’s favorite activities is going to La Quinta Park. Last August, the city installed accessible swings there to accommodate children with disabilities.
“We really need inclusivity in our community,” says Sipe.
Benji’s family is now crowdfunding to purchase a wheelchair van that has been converted to accommodate Benji’s constant travels from Coachella Valley to Loma Linda to see doctors.
See News Channel 3 tonight at 6pm for the full story.
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