Who is Kellisa?

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Kellisa is a 25 week micro preemie born in May 1999 and survived her emergency birth despite leading doctors in Illinois and Florida preparing us for a maximum life span ranging from a few minutes to at most, a few hours. Sadly, her identical twin sister, Kirsten, only lived 27 hours because her blood vessels weren't developed enough to survive outside the safety of the womb. Kellisa weighed just 2 pounds, 1 ounce at birth and dropped down to a dangerous low of 1 pound, 11 ounces. She endured her first two surgeries while spending 113 days in the neonatal intensive care unit (NICU) at Rush University Medical Center in Chicago, IL.  


While stopping breathing was a regular occurrence for Kellisa in the NICU, one afternoon remains as a vivid memory for her parents. While on her father's chest one afternoon, Kellisa coded and it took a team doctors and nurses 45 minutes of frantic efforts to revive and stabilize Kellisa enough to be returned to her incubator, where they continued their care. 



Major Diagnoses

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Hydrocephalus
Cerebral Palsy
Epilepsy
Developmental Delays



Disabilities

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Kellisa uses a wheelchair and can propel herself. Kellisa has difficulty communicating, she uses pointing, minimal sign language, and one word commands. Kellisa is often frustrated because her receptive skills are more advanced than her expressive abilities. She receives all her liquids, medicine, and necessary nutrition through her G Tube.

Okefenokee National Wildlife Refuge, GA
January 2014


Surgeries- 23

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Heart- 1
Brain- 10
Eyes-2
Gastrostomy Tube (G Tube)- 4
Hips- 4
Tonsillectomy/Adenoidectomy- 1
Breast- 1


Interests- Music

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Kellisa loves music and her favorite musicians are The Wiggles and Hannah Montana/early Miley Cyrus. 

One afternoon when Kellisa was only 3 years old, she was laying lifeless in a hospital bed one morning. Lisa was changing the channels on the TV and stopped at The Wiggles. Kellisa immediately perked up and started to watch the four colorful singing and dancing grown men for the first time. This was her first sign of life in days. Once The Wiggles were over, Kellisa drifted back to a deep sleep. This pattern continued for days. Kellisa would use her minimal daily energy to watch The Wiggles. 

Kellisa and mom at a Wiggles concert
Tampa, FL - November 2006

Kellisa attended the Hannah Montana/Miley Cyrus "Best of Both Worlds Tour" in Jacksonville, FL at the Jacksonville Veterans Memorial Arena on January 30, 2008. 

Miley Cyrus went out on the "Wonder World Tour" in 2009 and we were disappointed Jacksonville wasn't on the itinerary. As fate would have it, Miley was playing in Chicago one day after we were scheduled to leave after a long weekend trip to the Windy City. After securing 7th row floor seats, we extended our trip by two days.  

Kellisa and dad at a Miley Cyrus concert
Chicago, IL - October 2009


Creatures

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Kellisa picked a souvenir t-shirt with a large, hairy tarantula on the front while visiting the Grand Canyon National Park in March 2006.  Ever since, she's had a love for all creatures that give most people some amount of fright. Kellisa's favorites include, spiders, snakes, bats, and alligators. She can flip through vivid picture books for hours and always enjoys wildlife encounters in the wilderness and at zoos. 

Merritt Island National Wildlife Refuge, FL
October 2008

Travel

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Kellisa loves all forms of travel from long car rides, to 21 hours on a plane, and everything in between. I think it started when Kellisa rode along on 150 mile round trip as an infant to multiple doctors appointments most weeks. And when she wasn't going to see a doctor, she had endless rides to see her therapists. Kellisa has flown hundreds of times and her favorite parts are the take offs and landings, especially if they're extra bumpy, unless of course, there's severe turbulence.  

Kellisa enjoys scenic train rides and boat tours when on vacation. When the pavement ends, she always appreciates a ride down a dirt, gravel, sand, or snow road. Motion does not induce sleep with Kellisa, it's quite the opposite, she really comes alive when moving.

Kellisa feeling the LUV from a
Southwest Airline's Flight Attendant


All 50 States

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Kellisa visited and hiked at least one trail in all 50 United States by her 18th birthday. She repeated this accomplishment by her 21st birthday. 

Hiking with Egypt
Brazos Bend State Park, TX
March 2014


Ohai Loop Trail
Hawaii - October 2019

 

Notable Hikes

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White House Trail (Canyon de Chelly NM, AZ). 2.5 miles, 600ft. elevation change 
Cleetwood Cove Trail (Crater Lake NP, OR) 2.2 miles, 700ft. elevation change 
Black Mesa Trail (Black Mesa Preserve, OK) 8.4 miles, 654ft. elevation change 
2.38 miles across frozen Rainy Lake (Voyageurs National Park) 
Run on Water (Bayfield, WI) 4.2 miles across frozen Lake Superior 
Lower Portion of The Narrows (Zion National Park) 

Cleetwood Cove Trail
August 2009 

The Narrows
May 2013


Notable Races

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Completed 20 of 26.2 miles at the 2012 Bataan Memorial Death March 
(White Sands Missile Range)


March 2012


Completed 2013 Big Bend 25K (Big Bend National Park) 

January 2014


Activities

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Kellisa was a cheerleader in high school and has taken dance classes and participated in recitals on stage in front of hundreds of people. The highlight of her dance career was several performances at the Lazzara Performance Hall on the campus of the University of North Florida in Jacksonville. 

2011


Events

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Kellisa loves to be part of the crowd, so attending events is always a preferred activity. Kellisa has sat courtside at a Harlem Globetrotters game and got to meet all the players on the court after the game. She has attended a couple of circuses. Kellisa is Egypt's biggest cheerleader when watching her perform at recitals, musical, and plays. She loves attending the theater and it was a tradition to go see the Nutcracker with several of her close friends and their moms. Another favorite is her almost annual trip to see Disney on Ice. When Kellisa goes to see a movie, she has to stay until the credits finish and the light go on.

December 2005


Experiences

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Kellisa is not shy. When she sees something she wants to participate in, she will actively point and say, "Me." Kellisa's early neurosurgeon only put a few restrictions on Kellisa, no scuba diving, tackle football, hockey, and roller coasters where the bar comes down and surrounds the head. Later, her neurologists agreed and didn't add any limitations on Kellisa. We're not sure if the doctors realized we would take their blessings so seriously and help Kellisa accomplish her aspirations to thrive while pushing the limits.

Kellisa has rock climbed on an indoor climbing wall several times. Kellisa enjoys cave tours deep inside the earth. In fact, Mammoth Cave National Park invited Kellisa to be the first tourist to take the accessible cave tour after not offering it for many years due to a broken elevator. Kellisa even has an adaptable bike she can ride with help. She loves riding amusement rides, and trams and ski lifts to the tops of mountains, but perhaps her favorite experience was jumping on a Euro-Bungee (below).

Estes Park, CO
June 2012

 

Sports

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Kellisa enjoys playing sports. She is a Hall of Fame member of the Jacksonville, FL Miracle Little League. Kellisa participated in the Special Olympics for several years and never passes on an opportunity to have some fun. She has gone horseback riding, sledding (snow and sand), miniature golfing, swimming, and is an expert snowball thrower when taking aim at her father or sister. Kellisa also has fun going to professional sporting events, especially rooting for her two hometown teams, the Sacramento Kings and Jacksonville Jaguars.  



Outdoors

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Kellisa has always enjoyed spending time outside in nature, she loves to kayak, camp, and hike. Kellisa does not see herself as disabled when out in the wilderness and quickly graduated from ADA trails to rugged trails. She even gone on several backpacking trips, including a couple of visits to Grand Island in Lake Superior where there's more bears than people. Like everything else in Kellisa's life, the wilder the better!

May 2010


Accomplishments

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Highpoints

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Kellisa has reached the highest point in 22 of the 50 United States, ranging from easy "drive-ups" (Delaware) to serious hikes (Oklahoma). Kellisa had to over come a gate blocking the trail by going under it to reach Sassafras Mountain in South Carolina and her father had to abandon her off-road jog stroller in Maryland to carry Kellisa to the summit (picture below) because the trail became too narrow and rocky.

Backbone Mountain, MD
July 2010

National Parks Visited

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32  - Arches, Big Bend, Biscayne, Canyonlands, Carlsbad Caverns, Congaree, Crater Lake, Cuyahoga Valley, Death Valley, Denali, Everglades, Grand Canyon, Great Smoky Mountains, Guadalupe Mountains, Haleakala, Joshua Tree, Lassen Volcanic, Mount Rainier, New River Gorge, Olympic, Petrified Forest, Redwoods, Rocky Mountain, Theodore Roosevelt, Saguaro, Shenandoah, Voyageurs, White Sands, Wind Cave, Yellowstone, Yosemite, Zion

March 2013

Countries Visited

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2 - Kellisa went on a cruise to the Bahamas (January 2008) and has visited Canada on three vacations, Ontario twice and British Columbia once. 

October 2013

Airports Visited

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62 - Albany, Albuquerque, Anchorage, Atlanta, Austin, Baltimore, Billings, Birmingham, Boise, Buffalo, Charlotte, Chicago Midway, Chicago O'Hare, Cleveland, Columbus, Dallas DFW, Dallas Love, Daytona Beach, Denver, Detroit, El Paso, Fort Lauderdale, Hartford, Honolulu, Houston Hobby, Indianapolis, Jackson, Jacksonville, Kahului, Kansas City, Las Vegas, Little Rock, Los Angeles, Manchester, Memphis, Midland, Milwaukee, Minneapolis, Nashville, New Orleans, Oakland, Oklahoma City, Ontario, Orange County, Orlando, Palm Springs, Philadelphia, Phoenix, Pittsburg,   Portland Maine, Portland Oregon, Providence, Reno, Sacramento, Salt Lake City, San Diego, San Jose, Seattle, Spokane, St. Louis, St. Petersburg, Tampa                             

October 2018


Supplementary Pictures

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