Pasadena Shriners for Children Medical Center patient leads toy drive for other children instead of celebrating his birthday, joins notables in June 17 give-away
Published : Tuesday, June 18, 2019 | 5:02 AM
Now that’s an ambassador.
Ten-year-old Sebastian (last name confidential), Pasadena Shriners for Children Medical Center’s Patient Ambassador, decided he wanted to mount a toy drive for fellow children at the Center and, while at it, organize a simultaneous an exotic car meet, too, on his birthday in April.
That’s fairly remarkable for a youngster in and of itself.
But the real kicker is the fact this young person suffers from a rare disease called Osteogenesis imperfecta (OI). It’s an incurable genetic disorder characterized by bones that break easily and for no good reason.
Sebastian is luxury car buff who shares his passion on Instagram, where he has over 7,000 followers, among them important car-world influencers like Sean Lee, from the Purist Group, and Cody Walker whom, when they got wind of his plans for a toy drive/car meet at the Shriners Children Medical Center, promised to put some energy behind the effort.
So, when 45 children with June 17 morning appointments at the Center arrived, they found themselves in the midst of some 300 toys, a Ferrari, an Audi, a Karma, a Rolls Royce, a Mercedes, and other such eye candy for those passionately automotive.
At just six months of age, Sebastian began his first treatment to strengthen his bones at Shriners for Children Medical Center, according to Center spokeswoman Mayra Pereyra Luna.
Up until he was eight years old, the infusions would take anywhere from three to six hours, two days out of the week, every four to six months, she explained, but now Sebastian undergoes treatment for his OI once every six months for a duration of 45 minutes.
In addition to the bone-strengthening treatment, Sebastian has had a couple of rodding surgeries with the purpose of controlling repeated fractures and improving bone deformities that interfere with function.
“These surgeries allow Sebastian to gain mobility, sustain fewer fractures and experience less pain,” explained Pereyra.
She explained that, when Sebastian was getting the infusions, toys were a welcome distraction from the unpleasant business at hand.
“So he said that’s why he wanted to give back toys,” said Pererya.
Not surprisingly, such impulses run in the family.
Sebastian’s mother created a fracture kit to stabilize breaks while the family is out on vacation, far from their usual caregiver. “They’re also wanting to start a project that creates these fracture kits for other kids,” said Pereyra.
She said OI is a very rare condition about which most people know nothing, although the Shriners Children Medical Center sees its fair share of cases.
“He’s a very sweet boy,” she said, “and his mom is very energetic and she just wants to keep going and to give back. She’s grateful for the care her son has received here.”
The Pasadena Shriners for Children Medical Center is a remarkable, advanced medicine facility whose mission is carried out without regard to race, color, creed, sex or sect, disability, national origin, or ability of a patient or family to pay.
It is located at 909 S Fair Oaks Ave, Pasadena, For information call (800) 237-5055 or click here.