Whitnee Ice’s life has been defined by goals since she was in adolescence. At just 22 years old, Ice, a senior at Northwest, said she’s already accomplished a lot. This month she’ll be graduating with two degrees: communication rhetoric and interpersonal communication. Ice wasn’t even sure she’d graduate high school.
Her mother described her as a “determined child” who fears almost nothing and loves new adventures. An adrenaline junkie at heart, Ice enjoys riding roller coasters and being her dad’s copilot in the air.
“A lot of people think I don’t take risks, but I love to feel that rush,” Ice said.
Ice was born on March 11, 1998, after her mother was induced early due to heart problems related to her pregnancy. Ice had a dislocated hip at birth. She fell ill at 11 months old and was hospitalized for a period of time.
She lived out most of her childhood being treated like she was different, though no one knew what it was that made her different. Ice struggled with asthma most of her childhood and had a bevvy of health problems in eighth grade. A year later, she was hospitalized with a bowel obstruction caused by Superior Mesenteric Artery syndrome, which she initially thought was the flu.
After many blood tests and the Beighton flexibility test, Ice was diagnosed with Ehlers-Danlos syndrome at 14 years old.
Ehlers-Danlos syndrome is a group of inherited disorders that affect a patient’s connective tissues, including their skin, joints, organs and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body. One of these proteins is collagen: a protein that provides structure to much of the body — including your bones, skin, tendons, and ligaments — and a protein that Ice lacks.
Ice’s high score on the Beighton flexibility test led to her diagnosis. Those who have Ehlers-Danlos are often very flexible due to the lack of collagen in their bodies. It is estimated that Ehlers-Danlos Syndrome affects around 1 in 30,000 people in the world, most of whom don’t live past the age of 40.
The FDA didn’t recognize the syndrome until 1998, the year Ice was born. This made it one of the last possibilities her doctors explored due to the many unknowns surrounding it.
Following Ice’s diagnosis, she was connected to a team of specialists from neurologists to gastroenterologists. While she now knew where her health problems originated from, Ice didn’t realize the severity of her diagnosis. Her life expectancy was now unknown.
“I remember the cardiologist looking at me and asking me if I understood what this meant, and I said ‘yeah’ because I was meeting all these doctors,” Ice said. “But he was the first person to say ‘life-threatening,’ and that was scary.”
Ice was forced to quit athletic activities, begin schooling out of her home and set goals for her life expectancy. She and her family set the goal of making it to her Sweet 16, just two years away.
A year later, Ice was put on total parenteral nutrition, meaning Ice could no longer consume food by mouth due to gastrointestinal issues. TPN is a method of feeding that bypasses the gastrointestinal tract. She was given nutrients through a vein via what’s called a picc line, a vascular access device. Because Ice had allergies to some of the medications used in surgery, she was awake for the operation that installed her picc line.
“It’s odd making eye contact with your surgeon while he’s getting ready to work on your body,” Ice said. She often laughed and made jokes about her situation.
Ice was on TPN for eight months. She was sent seven “meals” in bags that had to be refrigerated. She was fed once a day with the help of her parents. Ice’s two brothers would go upstairs to play together while her parents put on masks, gloves and sanitized the kitchen. The family would then wait for the bag to reach room temperature before administering the food through the picc line. It would take up to two hours for the bag to be prepared and nearly all day to be emptied.
“I missed Christmas dinner, Thanksgiving, Halloween, my birthday,” Ice said. “I never realized how much Americans base their holidays around food until TPN.”
One day, the family was in a hurry and Ice’s father wrapped the bag in a warm towel. This warmed the bag too quickly so it was no longer usable. Ice had to wait 24 hours for the next bag.
Ice then tried an ounce of water a day. Then suckers just for flavor. She described it as “amazing” to taste again. Then came mashed potatoes. It took several months working back up to solid foods. Six years later, Ice still maintains a diet with restrictions.
Just a few days before her 16th birthday, Ice’s port got infected after a similar complication with her picc line the previous fall. Fortunately, Ice made it to her birthday with the help of her doctors. She then decided it was best to set a goal not associated with her age.
“That felt like putting a time limit on God’s abilities,” Ice said.
Ice decided her next goal would be to graduate from high school. While doctors encouraged her to pursue life in moderation, she kept up with her studies and achieved academic success. When Ice graduated high school in 2016, her whole family attended in support.
“There were lots of tears. I felt better knowing,” Ice said, before pausing. “If something happened to me, my mom had my diploma.”
Before she graduated, Ice’s high school counselor suggested she attend a college visit to Northwest with the rest of her class. Ice remembers the cold and the rain, but she also recalled how happy everyone looked to be there. She and her family decided she could try one semester of college.
In a message to the Northwest Missourian, Ice’s mother Pam recalled driving to Maryville to help her daughter move into her dorm room. Ice became ill on the way but was determined to make it.
“Her dad and I looked at each other and said we hope she can make it at least one semester to have the college experience,” Pam Ice said. “She proved us wrong.”
During her first semester, Ice broke three bones in her feet after falling in her dorm room. After a month of neurology, blood and heart tests, her doctors realized her adrenal gland was causing her to have seizures due to her body's inability to control adrenaline levels. They had also caused a malformation of her hippocampus -- the area of the brain responsible for learning and memory -- leading to a memory loss diagnosis.
While she’d been in a wheelchair on and off since her diagnosis, having both feet immobilized from the fall caused her to get a motorized wheelchair. After finding the right combination of medications to control her autonomic functions and seizures along with rehab, she is finishing out her last semester without a wheelchair.
Ice’s circulation has worsened, sometimes causing vasospasms where veins can collapse and cause damage to organs, muscles and tissues. They are sometimes painful but Ice said she’s become accustomed to her chronic pain. Weather conditions can make vasospasms more likely due to cold temperatures, so Ice uses her wheelchair more during the winter months.
After making it through the first semester, she made it through three more and realized she wanted to go for her degree. While she changed her major many times, her goal was consistent. She told her adviser she wanted to tell people life was worth living. Her adviser suggested motivational speaking.
Her need for experience led her to KXCV/KRNW Public Radio as an on-air announcer.
“Her communication skills are already great,” Station Manager John Coffey said. “We admire her work ethic, and she’s just a wonderful person.”
While Ice attended classes and worked for the radio station, she served on the CatVision team led by instructor Adam Bochart.
“She is easily one of the most positive people I’ve ever met,” Bochart said. “At any point in her life if something has seemed impossible, she’s found a way to do it.”
Ice is in the beginning stages of writing a book and looks forward to graduation in November. Her grandparents cried at the news that she would be getting her bachelor’s degree. She said she looks forward to her brother’s wedding this month, a day she said she never thought she’d see.
Ice said she now lives with the mentality to make today good so tomorrow can be better. She’s in the beginning stages of writing a book and said she hopes to work for a non-profit health center.
Many ask Ice if she’s afraid to die, and to that she answers no. However, she is afraid to leave things unsaid if she were to die. She said she believes in forgiveness and acceptance and wants no one to feel pain or guilt.
“It matters what my soul is doing,” Ice said. “I know I’ll live a long life whether it’s here or in heaven.”
Ice said her faith has given her a sense of hope nothing else has.
She then recited 2 Corinthians 4:16-18, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”