Community rallies to help sick child
Five-year-old Rachel Bender’s severe health issues have been devastating for her family.
At 15 months she showed signs of joint stiffness and her digestive system flared up in a series of painful spells. Doctors subsequently diagnosed her with Juvenile Rheumatoid Arthritis, an over active immune system, Ulcerative Colitis and Proctitis — each involving painful inflammations of the bowels and rectum — and Uveitis, an irritation of the middle layer of the eye.
The most challenging of her ailments, Ulcerative Colitis and Proctitis, has put the family in a constant state of anticipation waiting for the next potential flare-up and now, at 5 years old she visits the bathroom up to 20 times a day when her condition is especially acute. The family has been driving Rachel back and forth to the All Children’s Hospital in St. Petersburg for years, but there isn’t much the doctors can do.
“It is life-long and chronic, and there is no cure,” said Mark Bender, her father.
Fortunately, the Benders secured an appointment for Rachel with an expert at the Children’s Hospital of Philadelphia named Dr. David Piccoli, chief of the Division of Gastroenterology, Hepatology and Nutrition. He will see Rachel this month, but with most of their savings spent on treatments, the family is short of money.
“It devastates you, and wipes you out,” said Bender.
The Benders spend $11,000 each year on insurance. Thousands of dollars in medical bills are past due and the home where the family of four has lived for five years is ready to be handed to the bank in foreclosure. Their appointment with Dr. Piccoli is next week and the family scheduled their trip for May 12-22, but they didn’t have enough money to make it to Pennsylvania, let alone cover the medical treatments for Rachel.
Rebecca Hines, founder of Destiny Diaper Bank, the only non-profit in Florida that provides diapers to low-income families and those with special needs has worked with the family since Rachel was born. The bank hands out approximately 7,000 diapers each week and the Benders have used the bank to get diapers.
“We helped them with diapers, she needed them for school and home,” said Hines. “Her father, Mark, has been talking about if they could only go to the hospital in Pennsylvania, they just knew it would make a difference in Rachel’s life.”
Hines listened to the family’s situation and decided to send out an e-mail blast to all the organizations she works with to see if anyone was interested assisting the Benders.
“I have been in their home, they’ve sold everything, they have no furniture and have done whatever it takes to pay for the co-pays and gas money back and forth to St. Petersburg,” said Hines.
An account was opened at Fifth Third Bank under the name of “Rachel’s Flight,” and donations can be made at any branch location. The family estimates that a total of $50,000 is needed to cover the 10-day stay and any procedures ordered by the doctors. Once in Pennsylvania, they plan on staying at the Ronald McDonald House near the hospital, as long as there is a vacancy.
Michele Andre, president of the Bridge Networking Group, also heard about the Benders in an e-mail she received from Hines. Her organization is a networking group for local businesses in Southwest Florida, and Andre took it upon herself to rally the business community to raise money for Rachel’s Flight.
She planned a series of fund raisers, one at the Wine and Roses restaurant Thursday night and a Mother’s Day celebration at Anthony’s on the Boulevard on Sunday. Hines said the flight is the ultimate Mother’s Day gift to Kathy Bender, Rachel’s mom.
Close to 75 business owners came to the event on Thursday to bid in a silent auction. More than 100 items were included and Andre said the event will raise a minimum of $1,000, adding that a national women’s organization called Women’s Life would match every dollar raised up to $500.
“Our first goal is to make sure she gets to Pennsylvania,” said Andre.
The Bender family came to the fund raiser at Wine and Roses, including Mark, Kathy, Rachel and their 8-year-old son Luke, who hasn’t had any of his sister’s health ailments. Mark Bender carried Rachel, a petite, fair-skinned blonde, around the restaurant and thanked the community for their support.
“These people open their arms with loving kindness and we wanted to make a showing,” he said.
He described how Florida doctors have described Rachel as a “complex case,” and that her digestive inflammation has prevented her from absorbing nutrients and minerals from her food, resulting in a condition called “failure to thrive,” where a child’s rate of weight gain is much lower than other children of similar age or sex.
“They are saying she isn’t growing,” he said, pointing out how small and frail she is for her age. Only days before the fund raiser, Bender said she had broken her leg and only recently got out of the cast.
“We are fortunate to have the opportunity to see one of the best doctors in the world,” he said.
But, he firmly believes that any treatments she would receive in Philadelphia would change her standard of living. Rachel is able to attend a pre-kindergarten program but only for three hours each day because the unexpected nature of her condition makes it difficult to go full time.
There is a four-month waiting list to see Dr. Piccoli and he isn’t accepting any new patients, he said. Landing an appointment was an example of being in the right place at the right time.
In January 2009, Kathy Bender ran the Miami ING Half Marathon to benefit Crohn’s Disease and other Inflammatory Bowel Diseases. After completing the 13-mile run, she was introduced to a number of other advocates and doctors, among them Dr. Piccoli. After hearing about Rachel he asked the family to send her medical records and contact his office to schedule an appointment.
There is one last fund-raising event for the Benders. On Sunday, May 9, from 6:15 p.m.-8 p.m., certified hypnotist Wayne Walker is putting on a show at Anthony’s on the Boulevard. It’s a Mother’s Day celebration and a silent auction will raise any additional funds until all donations are handed to the family on Sunday.
Some $4,000 worth of products and services were collected for the auction from businesses on Del Prado Boulevard.
During the show Walker will hypnotize a number of volunteers from the audience. On average, he works with between 10-12 volunteers who he’s never met before. Walker has been a hypnotist for 12 years and was recently certified in Las Vegas.
“I put them under mass hypnosis and change their reality,” said Walker, who will hypnotize volunteers so they forget how to spell their own name or count to 10 but forget the number seven.
Tickets for the show are $10 for adults, $7 for mothers, $3 for children 11-17 and free for those under 10. Mothers will receive flowers and gift bags, and can receive a free appetizer with a purchase of two tickets and dinner.