Jacob’s Inspiring Journey: Defying the odds with grit and determination

May 3, 2024, 6:40 PM | Updated: 7:23 pm

SALT LAKE CITY — At just 15 years old, Jacob Packer is a force to be reckoned with.

He’s not your typical teenager – he’s a champion mountain biker, an avid golfer, and shares his musical talents performing in a choir. But behind his infectious smile lies a remarkable story of resilience and courage.

Jacob has been a patient at Primary Children’s Hospital for most of his life. He was diagnosed with a terminal condition called mucopolysaccharidosis, type six, when he was just three and a half years old.

Jacob Packer at the hospital after a medical procedure.

A young Jacob Packer at the hospital after a medical procedure. (Courtesy: Packer Family)

This rare genetic disorder causes his muscles to grow faster than his bones, presenting unique challenges and requiring frequent treatment at the hospital. Despite the odds stacked against him, Jacob’s spirit remains unbreakable.

When he was first diagnosed, Jacob’s parents, Vanessa and Jaron Packer, sought the best care available for him. They knew their son’s condition was terminal, but they also knew that there was a treatment available at Primary Children’s Hospital.

Jacob Packer with his parents Vanessa and Jaron Packer.

Jacob Packer with his parents Vanessa and Jaron Packer. (KSL TV)

One of Jacob’s earliest battles was a neck surgery. His spine was fused to stabilize it, and he wore a neck brace during recovery.

The pain was intense, but the alternative – paralysis – was unthinkable. Vanessa and Jaron Packer made tough decisions, always with Jacob’s best interests at heart.

To help treat his condition, Jacob now undergoes weekly infusions at the hospital.

Jacob Packer surrounded by hospital staff.

Jacob Packer surrounded by hospital staff. (Courtesy: Packer Family)

Around age nine or ten, Jacob asked his father a poignant question: “What would happen if I stopped having these infusions?”

His parents hadn’t broached the topic of lifespan before but let him know his life would likely be cut short without the treatments.

Jacob’s response was remarkable – he chose to focus on the positive, living fully regardless of the odds.

Jacob Packer hiking with his family.

Jacob Packer hiking with his family. (Courtesy: Packer Family)

If this was a terminal condition, he decided he would embrace every moment he has. Jacob’s love for biking and golfing have become his wings to soar beyond limitations. He is a champion golfer and avid mountain biker. He loves the thrill of riding fast downhill.

Jacob’s grit, determination, and zest for life are an inspiration to everyone who knows him.

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Jacob’s Inspiring Journey: Defying the odds with grit and determination