Most people who use a wheelchair favor smooth pavement, but 16 -year-old Kellisa Cain has always wanted the ground beneath her to be bumpy, bumpy and crazy, her father said.
Kellisa, who lives in Jacksonville, Fla ., with her mama, Lisa, her sister, Laurel, and her father, Chris, has hydrocephalus and cerebral palsy conditions that have left her developmentally delayed, prone to seizures, and reliant on assistive devices. Doctors didnt expect Kellisa would survive long after birth, but when she did, Chris promised her that despite any potential health complications in the future, hed make sure she lived the most normal life possible. He also vowed to show her the world.
Since then, the wheels of Kellisas jog strollers have touched the clay at Great Smoky National Park, the red clay at national park in Sedona and the Grand Canyon, and the grass on an island off Lake Superior. Shes visited 47 of the 50 states that her father wants her to see by the time she is 18.
We started out with simply the wheelchair, and Ill be honest with you: We were on trails we had no business being on in a wheelchair, Chris, 44, told FoxNews.com. Outdoors, he told, Kellisa goes alive.
Defying the odds
Weve merely ever seen one other kid in a wheelchair doing this stuff, Chris said, and it violates my heart that other children are trapped in their bodies and in their home. I want people to see Kellisa and know that its worth it.
Kellisas twin sister passed away 27 days after birth, but doctors predicted Kellisa was the one who wouldnt make it. The girls were born premature at 25 weeks and with twin-to-twin transfusion disorder, which occurs when twins share blood furnish from a single placenta. The recipient twin in this case, Kellisa is born larger and takes more blood from her sibling, who is called the donor twin and is the smaller of the two. During the pregnancy, Lisa nearly died.
Kellisa expended the first 16 months of their own lives in the ICU, and her early childhood was riddled with doctors visits, surgeries 22 to this day and prescription drugs required for epilepsy. Hydrocephalus and cerebral palsy, which are common comorbidities, are marked by an excess of liquid in the brain and muscle dysfunction, respectively. At birth, extreme pressure on Kellisas brain led to internal bleed and post-hemorrhagic hydrocephalus of prematurity.
Sixteen years ago, the majority of those children did not survive and she did survive, Dr. Kim Dal Porto, Kellisas pediatrician in Jacksonville since she was 2, told FoxNews.com.
In highly premature newborns, that internal bleed is common but doesnt always result in hydrocephalus, as was the case for Kellisa. To control hydrocephalus, she use a nonprogrammable shunt, which is a device implanted in the head and connected to a tube that empties excess cerebrospinal liquid into the abdomen. Shunts are one of the most common therapies for hydrocephalus, and as she has grown, Kellisa has had about a dozen surgeries to either replace or adjust the device.
Having more than a dozen shunt surgeries by early adulthood isnt uncommon among hydrocephalus patients, Mark Luciano, a prof of neurosurgery and the director of the Cerebral Fluid Center at Johns Hopkins University, who has not treated Kellisa, told FoxNews.com. He told while shunts have a 5 percent infection rate and implanting them can be life threatening, taking journeys by automobile and airplane usually isnt a problem for hydrocephalus patients so long as the shunt is functioning properly.
Dal Porto told hydrocephalus posed more of a health menace to Kellisa as a child, but today her primary diagnosis is spastic cerebral palsy, which means her muscles are too tense.
For that, for her whole life,[ Kellisa] has had tons of physical therapy and occupational therapy, Dal Porto told. She added that Kellisa watches a GI specialist due to the feeding tubing she must use to beverage liquids, as well as an orthopedist for her cerebral palsy, among other specialists.
David Hammond, Kellisas neurologist, told FoxNews.com that Kelissa takes Lamotrigine and Topiramate to help control her seizures. Those drugs have helped ward off the prolonged episodes of seizing called status epilepticus seizures that she had more often when she was younger. Sometimes, Kellisa still has minor episodes when her arms and legs stiffen.
On journeys when Chris and Kellisa are remote from a hospital, Chris keeps the seizure rescue medication Diazepam on hand to administer to Kellisa by rectum, but hes merely done this a few days, he said.
As long as the seizures are controlled, we want our patients to live as normal a life as possible, Hammond said.
Starting with baby steps
Dal Porto and Hammond told Kellisa fits the mold of a typical patient with hydrocephalus and cerebral palsy, but when asked to describe what induces her different from them, they use terms like expressive, optimistic and ambitious.”
She is very tuned into cues and what other people are saying and doing, Hammond said.
To communicate with their own families, Kellisa use a combination of sign language and uttering simple terms like yes to indicate how she feels and what she wants.
I feel like she is living life, Dal Porto told. You feel like she actually is enjoying things. Shes got music she likes, vocalists she likes, and friends.
Chris knew his daughter was destined for more than being cooped up indoors when they began their slew of jaunts with mild hikes in Florida.
We started with baby steps, Chris said, and she would giggle and chuckle, and look up at me, and at some phase she would say, More, and sign language for more.
Throughout Kellisas life, the Cains have gone through five different jog strollers , not counting the device they use now and that they ordered from France. The jog stroller, a Hippocampe chair, has three rugged wheels: two larger ones in the back on either side of the seat, and a smaller one in front. It has a handle so Chris can push her, or Kellisa can wheel herself.
Before getting the Hippocampe chair, Chris would accommodate jog strollers hed buy off the shelf, replacing tires until the structures would break.
We would do stuff, and I would notice the bumpier and harder it was, the more she liked it, Chris said. It could be grooves, boulders, simply anything. She liked that, and that would give me the clue and the motivation to do more, and we kind of progressed and grew with what we were doing together.
Chris credits his daughters sense of adventure to zipping around the state of Florida by automobile to attend different doctors appointments. That included 69 -mile one-way trips from home to Arnold Palmer Hospital for Children in Orlando about four times per week from the time Kellisa was 6 months to 2 years old. When the Cains relocated to Florida from Chicago when Kellisa was an infant, they tried warmer weather to avoid exposing Kellisas weak lungs to bitter Midwestern winters. But since they are didnt know what was in store for her health, they didnt know she would need to see so many specialists.
Inspired by his own childhood desire to flee urban Chicago to hike outdoors, Chris admitted that when he promised Kellisa hed take her across the U.S ., he didnt know whether it would be attainable.
We didnt know whether Kellisa was going to live minute to minute, but it was something big that we could focus on, Chris said. I needed to focus my mind on something other than all the alarms and doctors and nurses and surgeries, and I kind of got some peace with that.
Of all 50 U.S. countries, merely Iowa, Hawaii and Alaska are left.
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