Student Fighting Sickle Cell Had One Wish, She Opted For A Scholarship
For Fernandye Eugene, perpetual pain is an everyday reality.
The 21-year-old frequently experiences blood clots on her arms, legs and feet.
Sometimes she struggles with simple functions like breathing and walking.
When the pain is too intense, she blacks out.
Eugene has sickle cell disease, a rare genetic blood disorder that causes a person’s red blood cells, which carry oxygen and carbon dioxide throughout the body, to be shaped like a “c” rather than an “o.”
When that happens, her red blood cells clump and die, resulting in anemia and restricted blood flow. The pain hinders many areas of her life, including her ability to go to school.
Although she graduated from Miami Norland Senior High School in 2021, sickle cell disease prevented her from attending college.
However, that changed this spring when she was granted a $10,000 scholarship by the Make-A-Wish Foundation’s South Florida chapter—a non-profit organization dedicated to fulfilling the wishes of children with chronic illness—to pursue an associate’s degree in business at North Campus.
While many kids ask to attend a concert, travel or meet a celebrity as their wish, Eugene opted for an education. However, her wish was delayed nearly four years because of COVID-19 and her condition.
“She chose this wish because she knew the importance of education,” said Shelby Ruebens, who volunteers at MAW and helped bring Eugene’s educational aspirations to life.
College Life
At MDC, Eugene is taking English, American federal government, intermediate algebra and computer applications.
But her sickle cell symptoms often get in the way.
When her pain is too much, she stays home. When it reaches intolerable degrees, she checks into Jackson Memorial Hospital.
Eugene’s sister, Karina, often accompanies her.
Although Karina doesn’t stay with Eugene for the entirety of her hospitalizations—which can last between four days to three weeks—Karina supports her throughout the process of being admitted into the hospital, assigned a room and given medication. That can take as much as two days in extreme cases.
“She likes me to be her emotional support,” said Karina, who keeps a bag prepared with medication, clothes and snacks for her sister’s medical stays.
Eugene’s hospitalizations often cause her to miss class. Her most recent visit was in February and lasted 10 days. It was due to pain and COVID-19.
Jenniffer Niles, Eugene’s English professor at North Campus, was overjoyed to see her return.
“The idea of anyone being in the hospital for any period of time gets to me, and she’s young; I know she’s living with this disease for the rest of her life,” said Niles, who works with Eugene to catch up on assignments she misses due to her absences. “I was just happy to see that she was able to come back to doing something she wanted to do, even if it’s just for a moment.”
Growing Pains
Eugene was born in Port-au-Prince, Haiti to Mercedes and Brunel in March of 2003.
Her family immigrated to Miami when she was six years old. They settled in North Miami Beach.
When she was about 10, Eugene’s left arm swelled up. When her parents took her to the hospital, they thought her arm was broken, so she was fitted for a cast.
Eventually, the swelling went down.
A year later, the issue returned. During a trip to visit family in New York, Eugene developed a swollen left ankle that progressively worsened.
She was given Tylenol, but the swelling didn’t subside. Eventually, her ankle ballooned to “the size of a baseball.” She started limping and crying and was unable to walk.
A week later, she was rushed to New York University Winthrop Hospital where she was diagnosed with sickle cell.
At first, Eugene’s symptoms caused her to go to the hospital three to four times a year, but as she has gotten older, she now averages five to six hospitalizations annually.
Since there is no cure for the chronic condition, Eugene is only treated for her symptoms. At the hospital, she is administered intravenous fluids, pain medications such as morphine and fentanyl, and blood transfusions when her red blood cell count is low.
Eugene’s hemoglobin levels are usually between nine and 10 grams per deciliter. The average hemoglobin levels for females is between 12 and 16 grams per deciliter, according to the National Institute of Health.
The lowest her hemoglobin has ever been is at 4.2 grams per deciliter.
“[Doctors] told me they’re surprised that I [was] still able to walk,” Eugene said.
About three years ago, Eugene began experiencing fainting spells. Six months ago, she discovered her hips were decaying due to a lack of blood flow.
Her body is affected by changes in temperature, lack of sleep, poor diet, low water consumption and even her emotions. The smallest things—an abrupt tap on the shoulder, play fighting or riding roller coasters—can trigger pain.
“I love doing crazy things. I was somebody who threw caution to the wind when I was younger,” the roller-coaster fanatic said. “But now I got to be cautious of staying safe because I will suffer if I don’t.”
Fighting On
Eugene acknowledges she is struggling in her classes because of the pockets of time she has missed due to her illness, but she is staying positive—seeking tutors.
“Something my mom definitely wanted me to do—like, drilled into my head—was to go to college, not [just] because the school would be good for me. She didn’t want me to be at home doing nothing,” she said. “If nobody is at home with me, and I faint or something happens to me, there would be nobody to call.”
The young scholar is undecided on whether to pursue a bachelor’s degree, but the one thing she is certain of is that she wants to be her “own boss.”
“I commend her,” Niles said. “It can’t be easy, you know, and the complications that she has to deal with, not just the disease itself. When you get sick with one thing, [it] can evolve into something else, and then still try to juggle being a student, keep up with your studies and put on a brave face sitting in class [when] you might not be feeling well.”
Although she has a long road ahead, Eugene leans on the support of her family and God to get through the daily rigors she battles.
“Nine times out of 10, for a sickle cell person, you will always have pain,” Eugene said. “You have to decide for yourself whether it’s enough pain to go to the hospital and miss whatever it is that you’re doing right now, or if whatever you’re doing right now is more important.”
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