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Thursday, July 31, 2014
Amsterdam, NY ,

Alissa Scott/Recorder staff Anthony Podrazik, 4, was born with Giant Cape-like Congenital Melanoctic Nevus, a condition that covers 83 percent of his body with large, black, hairy moles.

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Benefit planned for child suffering rare disease

Saturday, March 22, 2014 - Updated: 4:09 AM

By ALISSA SCOTT

alissa.scott@recordernews.com

Four-year-old Anthony Podrazik flipped through pages of his favorite book "Put Me in the Zoo" by Dr. Seuss.

"It's about this animal that has spots," Megan Podrazik said, smiling at her son, "so he thinks it's him in the book."

Anthony's face is speckled with small, beauty mark-like spots, and the rest of his body, 83 percent, in fact, is covered in large, black, hairy moles.

He has suffered from Giant Cape-like Congenital Melanocytic Nevus since he was born.

When Megan Podrazik, 24, was pregnant, prior medical conditions led doctors to believe she was at high-risk for birthing a sick child. During her ultrasounds, technicians said it appeared Anthony's limbs were different lengths.

On July 17, Podrazik was admitted for a Cesarean section.

"It was kind of like out of a movie, really," Podrazik said. "Everybody kind of just stopped talking. The baby wasn't crying at first. I was like, 'What's wrong? What's wrong?'"

Doctors brought Anthony to the intensive care unit, and Podrazik got to see him for the first time twenty-four hours later.

"He was in a little box with a lamp on him, laying on his belly," Podrazik said. "He was in this little tiny ball with his back hunched up in the air. He had these large lumps all over him."

It took a while for doctors to determine Anthony's condition, and they still don't really know what it means.

As of now, there is no cure.

For many children born with Nevus, but without other internal illnesses, doctors are able to surgically remove the moles, and use skin grafts to repair the area.

However, because Anthony's encompasses so much of his body, that isn't an option for him.

"He is 100 percent ineligible for nevus removal now," Podrazik said. "Skin expanders, skin grafts, none of it. His coverage is so high, that he has no clear skin to take from. His back is completely covered."

Podrazik described the moles as "frail, elderly person's skin." When he was a toddler, Podrazik cut up socks to make homemade knee pads so he could crawl around.

The moles cover his skin, including his sweat glands. The only place Anthony can sweat is his face, which creates a problem in the summer. Anthony and his mom love to kayak and camp together, but when he's outside for extended periods of time, he is at risk for dehydration and skin cancer.

His condition has caused other issues as he has grown. Anthony has a cyst on his spinal cord that causes fluid compression and pushes his spine inward. He has another cyst on the back of his brain, which also causes compression, and a lack of fluid in his brain.

"Because of that, he has issues walking, with coordination and balance and he has inverted toe-walking," Podrazik said. "It causes his legs to shake, and he's constantly falling. Just the other day he fell and ripped his gums open."

Walking on tiptoes is more comfortable to him and he prances around, hopping on his toes nonstop -- all smiles the entire time.

"He's always happy," Podrazik said. "He stays super positive. There's nothing I can do to fix it, so what do I do? Be upset all the time? No. I make him feel good and feel positive about it all. It keeps him happy."

There's a conference in Dallas that Podrazik hopes to speak at with her son. Doctors from all over the world will attend to share research and discuss the extremely rare disease.

But between traveling to Colombian Presbyterian Hospital in New York City, and affording places to stay, costs rack up.

Podrazik has organized a fundraiser "Got Spots" April 5 at the Amsterdam Elks Lodge. Tickets cost $25 for those 10 and older. Everyone else is free. There will be food, refreshments, raffle tickets, wrist bands and all day entertainment.

"I don't even really care about the money," Podrazik said. "I mean of course it will help absolutely, but I want to spread awareness about this illness and I want people to come and meet Anthony and just have fun."

There will be local bands, a tie-dye T-shirt booth, arts and crafts, clown and balloon art.

All money raised will go toward help with medical expenses, the trip to Dallas and hopefully a device for mobility.

Right now, Podrazik carries Anthony, who weighs 60 pounds, everywhere. Their insurance company doesn't cover anything to help him get around on his own.

"I want to get like $1,000 together and bring it to some shop and say can you make me a wheelchair that isn't a wheelchair, a jogging stroller that isn't a jogging stroller," Podrazik explained. "Something that's cool, that's fun, that's colorful, that's custom. That he can lay down in and sit up in and not feel restricted in. Something that he can go through nature in."

Podrazik said she has already received 30 donations and is hoping to raise $5,000. Those interested in donating or volunteering can contact Podrazik at 925-9286 or e-mail her at megpodrazik@gmail.com.

     

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