Sky Zone Fundraiser Set For Foundation Helping Kids Fight Rare Diseases

HOWELL, NJ — For children with rare illnesses, life is often a serious of hospital stays — sometimes very long ones. Few know that better than Jonna Crocker, who is battling a rare gastrointestinal disorder that has landed her at the K. Hovnanian Children's Hospital in Neptune a number of times.

Jonna and her sister, Alexandra, started the Fighting HARD Foundation to create a network for families to connect with other families coping with rare diseases, took their efforts to help other kids in their situation a step further last year. Their Fighting HARD Family Fund, established in December at the Neptune hospital for its Pediatric Pallative Care Unit, provides money to help families whose childen are hospitalized for lengthy stays.

The funds are managed by the Pediatric Pallative Care Unit's child life specialists at the unit, who work one-on-one with families to ensure a child's emotional needs are addressed as well as their health needs.

"With this money, they can give the parents a gift card to go out to dinner, to just get a break," Jonna's mother, Tara, said during an interview in December.

The Fighting HARD Foundation is an IRS-approved 501c(3) charity and all of its financial support for families comes from fundraising. Jonna and Alexandra, who do much of the work for the organization, from emails and letters contacting possible sponsors and thanking donors to coming up with ideas of ways to help families, started the organization a few years ago. The foundation has bought wigs for a girl whose disease was so rare her insurance company wouldn't cover the wigs; helped families faced with steep medical bills to pay utility bills, and provided opportunities for the kids and their families to get out and do something enjoyable that they wouldn't otherwise spend the money on, Tara said.

On Friday, June 9, the foundation will be conducting a fundraiser at Sky Zone in Ocean Township. The trampoline park has been closed for remodeling but has a grand reopening party planned, and will be donating a portion of the proceeds to Fighting HARD (HARD stands for Having A Rare Disease). There will be food, contests, raffles, giveaways and more, according to a flyer from Sky Zone announcing the event.

In addition, Sky Zone is offering a $30 Sky Swag pass for the month of June that includes 90 minutes of jump time, a water bottle, a jelly band and a Sky Zone pencil, and a portion of the proceeds from that pass will go to Fighting HARD as well.

"Sky Zone in Ocean is so awesome that they are teaming up with us to help give our Fighting HARD kids at K. Hovnanian Children’s Hospital passes to visit them," Jonna said in an email about the upcoming events. "We are even going to be giving out cool Sky Zone socks instead of hospital socks!"

"We are really excited about working with them," she said.

Most importantly, Jonna said, "the staff is super nice and help us to feel like 'normal' kids when we are there."

Feeling like a normal kid can be elusive for kids fighting rare diseases, and it's one reason Jonna and Alexandra started Fighting HARD — to make sure other kids know they are not alone in the battle, regardless of what rare illness they are fighting.

Fighting HARD just finished a pair of fundraisers, including their second annual clothing drive in Howell, and a color run in Bayonne. Both of those events were organized by other kids who are part of the Fighting HARD family, Jonna said.

"We think it is pretty awesome when the community comes together for a great cause," Jonna said.

For more information on Fighting Hard, visit the foundation's website, www.fightinghardfoundation.org.

Read more about Jonna and Alex and their outstanding work helping others here: Howell Girls Give Gift Of Community To Kids Fighting HARD Against Rare Diseases.

Photo courtesy of Jonna and Tara Crocker