Doctors say Mt. Washington boy's rare disease is mystery


by Gene Kang

Posted on May 15, 2013 at 5:02 PM

Updated Wednesday, May 15 at 11:44 PM

MT. WASHINGTON, Ky. (WHAS11) -- Imagine if your child was ill and you spent years in the hospital - now imagine if doctors were puzzled and had no diagnosis or cure for your child’s deadly disease. That's exactly what a Mt. Washington family is going through.

Ricky Santiago Perez and his family are trying to beat all odds, battling what doctors said is a medical mystery.

Ricky suffers from a rare, and potentially deadly, blood vessel disorder. He has spent years in and out of the hospital which depressed him. At the age of nine, Ricky has already been to the children's hospitals in Louisville and Cincinnati more than 20 times since 2010.

"With his lungs continuing to collapse and expand, he almost passed away many times," Ricky’s father, Ricardo, said.

Doctors from around the globe can't figure out why these abnormal blood vessels continue to grow on his lungs despite numerous surgeries to cork them.

"Usually when they do coilings with people they're usually done and they're ready to go forward. With Ricky it comes back with a vengeance," Ricardo said. 

Imagine how his mother felt when little Ricky was feeling scared in the hospital, unable to breathe, enduring yet another episode.

For hope, Ricky's dad and family wear a blue bracelet that reads "Ricky's Angel's, We're always with you!" A fundraiser started by his local Boy Scout Troop 333 in Mt. Washington.

It's the little things in life he loves to do like playing with LEGOS, which he's really great at. When you spend time with Ricky you would have no idea he suffered a  stroke and now has no feeling on the right side of his body. Somehow, after months at Frazier Rehab, Ricky regained control.

His tough spirit helped him to enjoy his favorite things like baseball, archery, and everything else kids love. But what's astounding is the polite and soft spoken kid inspired hope in thousands of people in his community and in countries he's never seen.

"You got post cards from Alaska, Puerto Rico, Germany, Kentucky, Los Angeles, Colorado,” Ricardo said.

After his dad posted updates about Ricky's plight on Facebook hundreds of beautiful messages from strangers came in.

Now, doctors will try experimental drugs on the little boy with the hope they can find a cure and put an end to this medical mystery.

"I would just pray to God to help him and help the doctors to some way cure his disease," Ricky’s mother, Jannette Perez, said.

Ricky will turn 10 Sunday, and as he continues to grow, so do the medical bills. His Boy Scout Troop 333 is selling bracelets to help with mounting medical bills.

Click here if you would like more information about purchasing a bracelet and to follow Ricky's medical journey.