Ocean Springs 10-year-old to help celebrate nonprofit milestone

Ocean Springs 10-year-old to help celebrate nonprofit milestone

OCEAN SPRINGS, MS (WLOX) - When many people think of the average 10-year-old boy, they likely envision lots of running, playing, and maybe even a little rough-housing. Because after all, boys will be boys.

However, that's not the always case for Levi Krystosek from Ocean Springs.

Although his personality is big, Levi is small. The 10 year old was born with a rare form of degenerative, debilitating dwarfism called Jansen's Metaphyseal Chondrodysplasia.

One of only 21 cases in the entire world, Levi doesn't let his condition slow him down. Although he is blind in his right eye because of optical nerve damage, his "super hero goggles" protect his good eye. In 2013, Levi braved surgery to realign both of his ankles.

On his Facebook page, Levi entertains nearly 5,000 fans with photos and videos of him enjoying everyday life.

On May 19, a clip from his very first piano recital garnered 181 likes, and dozens of positive comments. Feet steadily swinging from a piano bench, Little Levi beamed with pride as the crowd roared with applause after his solo.

But even though his family strives to give him a normal life, Levi endures many obstacles. His condition affects every bone in his body.

"The bones grow deformed and cause a lot of pain at times. His condition causes other things to go wrong because of the hypercalcemia (critical high blood calcium levels). For him, he has Stage One Kidney Disease, calcium deposits in the meat of his kidneys, optic nerve atrophy, ear problems that resulted in both eardrums to be reconstructed," Levi's mother Dona noted in an email. "Levi has had major head reconstruction surgery and both of his ankles realigned to help decrease pain and increase mobility."

Both of his parents wish for a pain-free productive life, and that's made possible thanks to Miracle Flights. A nonprofit organization that flies sick children around the United States for medical treatment free of cost, Miracle Flights has provided transportation for Levi and his family 12 times since he was 4 years old.

"He has to travel to Lurie Children's Hospital in Chicago, Illinois for specialized nephrology care and to the Alfred I. DuPont Hospital for Children in Wilmington, Delaware for specialized orthopedic care. In addition to traveling to Chicago and Wilmington, we take him to Birmingham and Mobile, Alabama," said Dona. "The expense of travel is overwhelming, but we know that by taking him to these specialists he has a chance of a better outcome."

On June 22, Miracle Flights will celebrate flight number 100,000. And Levi, along with his bubbling personality, will be on board.

"It's hard to put into words how thankful we are to Miracle Flights for helping to get Levi to his medical appointments," said Dona. I know that this Thanksgiving we will have a lot to be truly thankful for and it was made possible by Miracle Flights.

For more information on Miracle Flights visit www.miracleflights.org. To learn more about Levi, take a look at his Facebook page, Little Levi.

More than anything, Levi's family says they ask for thoughts and prayers. Cards and letters can be mailed to the following address:

"Little Levi" Krystosek
P.O. Box 323
Ocean Springs, MS 39564

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