Bikers Ride for Little Heroes Born with Rare Diseases

October 24, 2015

Before hundreds of bikers in leather jackets rumbled through the streets of Bergen County in his honor, double amputee Kayden Kinckle, 3, rolled along the Applebee’s parking lot in his battery-powered Tow Mater.

“He rides it all the time,” said his mother, Nikki, as his father followed him around.

Kayden, who was born with his intestines, liver and bladder outside his body, in a birth defect called omphalocele, and also had a leg and foot amputated because the umbilical cord had wrapped around his lower limbs, was one of the three “heroes” at the third annual Riders for Rare Disease Bike Run.

Kayden’s story received national attention last July when then-New York Jets quarterback Michael Vick shared a video of a 2-year-old Kayden taking his first steps on his walker after the double amputation and repeatedly saying, “I got it.”

Wore purple capes
The event drew bikers and other supporters to the fundraiser for the Let Them Be Little X2 Foundation, a non-profit founded by the Leider family of Elmwood Park to help rare-disease families, like theirs.

The “heroes” wore purple capes. Before the start of the ride, which took bikers to Bergen Community College in Paramus, N.J., the three young children took center stage atop a pickup truck. Jeff Leider, the president of the foundation, welcomed the bikers, and the national anthem played through the speakers.

The foundation helps buy medical equipment, pay medical bills and travel expenses, or cover the costs of a trip that creates a lasting memory. The name refers to the idea that children should be allowed to be young, and not be “robbed of their childhood with doctors and surgeries and medicine,” Jeff Leider said.

$10,000 raised
The X2 refers to his and Deena Leider’s sons, Jason, 9, and Justin, 6, who have Hunter syndrome, a deadly genetic disease that causes progressive neurological damage. In its severe form, which is what Jason and Justin have, the damage typically kills patients in their teen years. Jason and Justin are participating in a clinical trial in North Carolina that doctors hope can stop the brain damage and prolong their lives.

The first year of the bike run raised money for the Leiders. The second year, they decided to help others, too.

“I vowed that I didn’t want other families to go through what we went through,” Jeff Leider said, talking about the loneliness, uncertainty and fears for the future that followed the boys’ diagnoses.

The event raises about $10,000. During the event, a $3,500 stroller was donated to Gianna Cruz, a 12-year-old Lyndhurst girl with a rare condition that has caused heart and lung problems, spinal abnormalities and orthopedic conditions that make it difficult to walk long distances, said Anna Rizzo, her mother. The custom-made stroller was presented to Gianna, who was one of the children recognized at the bike ride last year.

Another honoree was Gorazd Oracevski, 6, who has a genetic fatty acid disorder that requires him to drink lots of water, eat early in the morning and snack throughout the day, said his mother, Eva. In addition, Salvatore Gonzalez, 7, who has hydrocephalus, or excessive fluid in the brain, was honored.

Read more at the source.

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