Friends Raise Funds for Riverview Boy in Need of Kidney Transplant

To all the world, he appears to be a typically active toddler with an infectious smile and big blue eyes filled with wonder.

However, Paul and Melissa Ranieri, the parents of 16-month-old Evan, know their son's outward appearance is just a facade.

In reality, every day is a battle to keep their son alive.

Born with hypoplasia of the kidneys, meaning his kidneys are underdeveloped and operate at 30 percent of normal kidneys, the Riverview boy will require a life-saving kidney transplant during the coming year.

In the meantime, he is kept alive with the help of a feeding tube and a profusion of prayer.

The Ranieris were thrilled when Melissa Ranieri became pregnant with their second child. Their daughter, Avery, is 4 years old.

However, their joy turned to anguish when doctors performed an ultrasound on Melissa Ranieri when she was 20 weeks pregnant.

"They told us we were going to have a boy," recalls Melissa Ranieri. "And then they told us they couldn't see any kidneys. We were informed that our baby simply wouldn't survive."

Devastated, the Ranieris sought a second opinion at Tampa General Hospital. This time the new was a bit more heartening. Rather than pronounce a death sentence for their son, the doctors advised the couple to wait and see.

That Christmas, the Ranieris solemnly advised family members not to buy gifts for the unborn baby.

"We just held on to hope," said Melissa Ranieri, who visited the doctor three times a week throughout her pregnancy to monitor Evan's progress.

At 37 weeks, on March 10, coincidentally National Kidney Day, Evan entered the world.

"He was having trouble breathing and they took him immediately to the NICU (neonatal intensive care unit)," said Ranieri. He spent the next 35 days of his life in the NICU while his parents anxiously watched and hoped their son would survive.

Evan Comes Home

The anxiety didn't diminish when the Ranieris were finally permitted to take their son home.

He was unable to eat so doctors placed a feeding tube down his esophagus. Then, at 6 months old, he underwent surgery to have a permanent feeding tube inserted in his stomach and Ranieri learned to feed her son with a syringe.

"The medications were the biggest thing," said Ranieri, noting that her son takes seven different medications each day and must have a weekly shot. "I was terrified, but now I can do it blindfolded.

"But the feeding issue is big for us," she said. In addition to the typical baby necessities, she carries a diaper bag filled with syringes and medications. "When I have to feed him, it sets him aside from seeming like a normal kid. But I don't care when people stare. I just feel empowered to educate people about kidney disease."

In fact, educating the public about the disease has become her mission.

"It's a disease you don't hear a lot about," she said. "I want people to know this disease is out there and I hope we're an inspiration for other families facing this disease. Evan is a true testament to miracles."

Evan's only hope to have a modicum of a normal life is a kidney transplant.

To qualify for a transplant, however, he must weigh at least 22 pounds. He now weighs 17 pounds.

"We'll start talking more about the transplant later in the fall," said Ranieri. "It isn't a fix. He'll always be on medications. And the life of a transplanted kidney is only 20 years so he'll eventually need another transplant. If anything makes me lose sleep, it's knowing he'll always have this disease. It just breaks my heart."

If tests show she's a match, Melissa Ranieri plans to sacrifice one of her own kidneys to save her son.

"I would be the best candidate, so I will be tested first," she said.

Easing the Financial Burden

On top of their constant concern for their son's health, the Ranieris have the added burden of knowing he faces a transplant surgery that could devastate the family financially.

Although the Ranieris have private health insurance, it won't cover the entire cost of the $500,000 kidney transplant. They are now registered with the national Children's Organ Transplant Association, an organization providing fundraising assistance to families facing a life-saving transplant. Evan has his own page on the COTA website that includes a button to make online donations, 100 percent of which goes to Evan's medical needs, as well as other fundraising activities on behalf of Evan and a personal blog on Evan's progress written by his mother.

COTA has also connected the Ranieris with other parents facing a similar situation.

"The support of others who have been through this has been very helpful," she said. "We've made great relationships and new friends."

But Melissa Ranieri said she doesn't know how she would have made it through the past two years without the support of her family and friends.

"We have a great support system," she said.

The Ranieris also are getting support from the community.

Today through Sunday, from 11 a.m. to 11 p.m., at 6046 Winthrop Town Centre Ave., Riverview, will donate 20 percent of every purchase to Evan's COTA fund when the customer mentions Evan or bring in the attached flier.

"The people at Menchie's have been very generous," said Ranieri. "And we're hopeful this will bring in a lot of people."

Friends also are hosting a fundraising golf tournament Oct. 14 at the , 4113 Great Golfers Place, Valrico, starting with an 8:15 a.m. shotgun scramble. With a sponsorship from Bright House Networks, organizers are hoping to attract 100 golfers. The cost is $80 per player and includes a continental breakfast, lunch sponsored by Smokey Bones Bar & Fire Grill, prizes, raffles and a live auction. To register, visit the tournament's website.

The Ranieris are looking for other fundraising opportunities as well. Anyone wishing to help can contact Diane and Frank Ranieri at 727-786-3079 or ranieri1@tampabay.rr.com.

Observing her son as he explores his sister's Barbie makeup kit, Melissa Ranieri commented, "You can't judge a book by its cover, even if it's cute. We've had a rough time but he's done so much better than doctors imagined.

"We don't know what tomorrow will bring," she added. "We just need to focus on one day at a time."