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Fundraiser scheduled for EDH youth with rare disorder

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From page A3 | May 08, 2013 | Leave Comment

DSC_0664e

MIKEY KELESHIAN, 12, center, stands with his parents Lucy and Michael in their home in El Dorado Hills. Democrat photo by Shelly Thorene

Plucky 12-year-old Mikey Keleshian of El Dorado Hills may have been born with a rare genetic disorder, but that’s not holding him, family or friends from doing everything they can to ensure that he gets well. And that includes holding a fundraiser for him so he can receive specialized treatment for his condition.

Born with what’s called Prune Belly Syndrome, Mikey has a congenital disorder of the urinary system that primarily affects boys. Often detected in utero, it is also called Eagle-Barrett Syndrome or sometimes Triad Syndrome.

The disorder is named from the poor development of abdominal muscles that cause the skin of the belly to wrinkle like a prune. Other symptoms are undescended testicles, urinary tract problems and related health issues. Many children afflicted with the syndrome also go on to develop liver cancer although doctors aren’t sure why.

It was at 16 weeks that Lucy and Mike Keleshian learned that their unborn son had Prune Belly. As a result, Lucy had four procedures performed on him while he was still in utero. Lucy said the early intervention helped but he still suffered kidney damage.

“A lot of children end up with kidney failure because their muscles don’t develop,” Lucy said. “Mikey’s at stage four of renal failure and eventually will need a kidney transplant.” Stage five is considered end stage renal failure.

Because kidney transplants only last ten to 15 years and rejection is higher with repeated transplants, his parents and doctors have been trying to extend the life of his kidneys as long as possible. As a result he catheters himself and takes 10 different medications a day to help prolong his kidney function.

“I feel like an old man with all these medications,” smiled Mikey.

In addition to all these treatments, Mikey has previously undergone separate surgeries for a club foot and a hernia with his most recent surgery being the placement of a bar inside his chest to keep his rib cage from pressing against his heart.

But all of these operations and medical procedures don’t seem to have fazed the youngster who philosophically says, “that’s how God made me.”

A visit to specialists

With so many different medical issues arising from having a Prune Belly child, the Keleshians have had to go from one doctor to another.

“Because kidneys control so much of the body, you need an array of specialists to treat the disease,” said Lucy.

That’s where the fundraiser comes in.

The Keleshians plan to use all the money raised at the upcoming event to send their son to the Children’s Medical Center in Dallas, Texas which has specialists in Prune Belly Syndrome. With a team of doctors examining him, they hope the center can either treat him there or develop a treatment protocol that his doctors in this area can follow.

His parents also want to use the fundraiser to raise awareness of Prune Belly Syndrome and encourage more people to become organ donors since many of those diagnosed with the syndrome will eventually require a kidney transplant.

A trades fundraiser

The idea for a fundraiser came as a result of a family and business connection.
Laurie Payne, a friend of the family and whose son Joey is best friends with Mikey, is president of RJT Framing, a general building contractor located in El Dorado Hills.
“I love Mikey like another son,” she said, tearing up.
She said she and other tradespeople recently landed a big job at Beale Air Force Base and in gratitude they wanted a project that would allow them to give back to the community. One idea was to hold a benefit for the El Dorado County Food Bank.

But the second most important cause, according to Payne, was Mikey, “who’s near, dear and precious to my heart,” she said. “He’s been through a lot and yet is so resilient.”

Payne said the fundraiser is being sponsored by her company and Balfour Beatty Communities and will be used to benefit both the Food Bank and Mikey.

Called the IV Tin Cup Charity Fishing Tournament, the event will be held at Folsom Lake, Granite Beach A and B, on Saturday, May 11 from 7 a.m. to 4 p.m.

Included in the day’s events will be a fishing derby, a 5K run, a family picnic featuring raffles and prizes, a silent auction, a bake sale, hairdressers and massages offering services for a donation, a salsa contest, watermelon contest and special prizes for mommies.

Events just for kids include viewing “wild things” such as alligators, boa constrictors and a hedgehog. There will also be face painting, sand games and cotton candy.

The El Dorado County Food Bank will be on site to accept contributions of pasta and canned goods. Sierra Donors will also be there to inform people about the importance of organ donation and to register those who want to become organ donors.

Lucy said they have already received a rash of donated items in addition to those bought for the auctions and raffles including a flat screen TV, Kindle Fire, four tickets to a San Francisco Giants game, appliances, a time share in Tahoe, tools, gift baskets and many more items.

The Toby Keith Restaurant in Folsom has also agreed to donate all the proceeds from their VIP lounge on May 9 to the fundraiser.
“I’m so grateful for the heart of this community,” said Payne. “They are very generous and kind. I’d like to thank the community for being that way.”

Payne said they hope to raise $15,000 from the event to cover the cost of sending Mikey to the hospital for a complete evaluation. She said there is no cost to show up for the fundraiser but the entrance fee for the fishing derby is $35. The 5K run is donation only.

“Just showing up and supporting Mikey is a blessing,” said Payne.

For more information about the event, people can contact Lucy Keleshian at 916-997-4087. For questions about the fishing tournament, contact Payne at 916-941-3934 or e-mail her at lp@rjpframing.com.

Contact Dawn Hodson at 530-344-5071 or dhodson@mtdemocrat.net. Follow @DHodsonMtDemo on Twitter.

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