University Daily Kansan / Friday, April 24, 1992
5
Genetic disease brings harsh realities
Continued from Page 1
much as her busy class schedule will allow.
Fitzpatrick says her relationship with Downing has strengthened her chat.
"I've always heard stories about how people come down with terminal diseases," she says. "I'd always wondered if I would be able to face that. I guess I learned that I could."
But she intentionally blocks the inevitability of his death from her mind.
"He's still here," Fitzpatrick says. "I'm not going to think about it."
Fitzpatrick says she and Downing sometimes talk about why she cannot think about his death.
"I don't know what it is," she says. "I sit down and try to think about it, but I can
Clay and Eleanor Downing have thought about their son's plight for years. When the Downings decided to have children they did not know that they both carried the sickle cell trait.
They spent two anxious years wondering what was wrong with their son before a doctor told them that Randy anemic disease called sickle cell anemia.
They were told that Randy's sickle cell anemia affected red blood cells, making the cells long and thin instead of round and flexible.
When many of the diseased cells become trapped and clog the blood vessels, oxygen cannot travel through the body normally. The oxygen deprivation causes severe pain in the joints, arms, legs and chest.
"Very little was known about sickle cell at that time, especially in this small town." Eleanan Downing says. "Randy was two years old before we found out we had the trait. We didn't know it was a genetic disorder."
"Am I afraid? I guess you could say I'm afraid of dying, although I shouldn't be because it's inevitable."
As she watches Randy struggle with sickle cell anemia, she fights her own battle against guilt.
"I know that there's no way I could have prevented this because I didn't know about the disease," she says. "I pray a lot and have strong religious beliefs, and I believe in the Lord that he will help me get through these guilt feelings."
The Downing family has attended the Church of God in Christ in Coffeeville for many years.
Randy Downing is the oldest of five children. Two of his sisters carry the sickle cell trait. They do not have the disease, but they could pass it to their children. His other sister does not have the trait or the disease, but Randy's 21-year-old brother, John, was diagnosed with sickle cell anemia when he was 16 years old.
Eleanor Downing says that she would not have had children had she known that two of them would be diagnosed with the disease.
"I had to wrestle with that for a long time because of my religious teachings, but now I think I would not have had children because I see what they go through, and I just wouldn't put any child through that," she says. "I love them and I just don't think it's a fair thing to do."
"I just go day by day," she says. "I try not to look too far ahead. I know that nothing's secure in this world. He could drop dead of a heart attack tomorrow. I don't get overly upset about it anymore because I realize that the doctor doesn't have the final
But Eleanor Downing refuses to dwell on the injustice of life or the prospect of her son's death.
say-so."
"I'm not going to have any kids, because I told myself that the sickle cell gene is going to stop with me," he says. "It was a really hard decision to make, but I knew I didn't want any kid to go through what I've been through because of me."
Randy Downing hasn't decided whether he will ever get married, but he says fathering children is out of the question.
Although Downing is adamant that he will not follow in the footsteps of his parents, he is not angry with them.
If Downing were going to name a hero, it would be his mother, he says.
instead, there is admiration in his voice as he describes his parents as a source of emotional strength.
"I'm sure she cried a lote behind closed doors, but I never saw it," he says. "She wanted me to draw strength from her."
that I have more of a chance of not making it to 35 than I have a chance of living to 99. I think I have to begin to deal with reality now, and the reality is that living to 35 is usually it."
Downing admits he is afraid to die.
"Am I afraid?" he whispers to himself,
and then answers, "I guess you could say I'm afraid of dying, although
I shouldn't be, because it's inevitable. Everybody's going to die, and every-
one knows that they could die at any time."
But Downing still is hopeful.
Downing's faith in God has been a source of comfort and strength in dealing with his disease.
"I freely on God a lot," he says. "I firmly believe that if it wasn't for him, I wouldn't be where I am right now. That's where a lot of my strength comes from."
Although Downing has contemplated suicide, he says he could not abandon his religious beliefs to go through with it.
"I think that's one of the things that has stopped me from committing suicide more than once, because that's a murder you can't be forgiven for," he says.
He pauses, looking intently out the window of the hospital room. He quietly says that at times he wonders if God is real.
"Sometimes you wonder," Downing says. "I don't wonder for long. It's just something sometimes that flashes through your mind."
The mild sunlight of early morning streams through the window of the hospital room and sounces off Downing's glasses as he paints a self-portrait with two words.
"Stubborn — at least that's what Debra says." He laughs, then is silent.
Amminutepasses as he seems to block out the atmosphere around him — a cheerful nurse giving instructions to the patient who shares his hospital room. The television blares a commercial. He breaks his silence with a sligh, leans against his pillow, shuts his eyes and grimaces as if he is trying to chase a thought out of his mind.
"Lonely," he says in a husky voice. "Yeah, I think those are the two best words. I think I have more feelings of loneliness on campus than almost any place else, and I don't know why, but I do."
Everything But Ice Omega Festival Specials
8'x10' Tent $49
Queen-size airbed $24
936 Mass.
Illustration by C.B. Morgan • Design by Woods Creative Gn
Jayhawk Bookstore
"at the top of Nautash Hill."
JBS Briti-Bus
Call for Special Charter Rates Mon.-Thurs. 843-3826
THE LYRIC OPERA OF KANSAS CITY PRESENTS
The Merry Wives of Windsor
By Otto Nicolai
Romance is such a silly game, but Fals staff thinks he has it mastered. The women of Windsor, however, have other plans. You'll be surprised to find out why the wives of Windsor are so merry!
All performances in English
April 24, 1992 8:00p.m. • Sponsored by: Boatmen's First National Bank
April 25, 1992 8:00p.m. • Sponsored by: Mobil Foundation, Inc.
April 29, 1972 6:30pm
April 27, 1928 7:30
April 27, 1992 7:30p.m. • Sponsored by: Util Corp United in recognition
April 27, 1992 7:30.pm. • Sponsored by UiLft.org United in recognition of the RC Neighborhood Alliance April 29, 1992 7:30.pm. • Sponsored by UiLft.org
April 29, 1992 7:30p.m. • Sponsored by: Jones & Babson
Generous group discounts ▶ *Tickets from $6.00-$35.00*
Russell Patterson, General Artistic Director
Financial assistance provided by the Missouri Arts Council and the National Endowment for the Arts The Lyrical flies LSAr.
Student Rush: $3.00 with I.D., 30 minutes prior to curtain
BECAUSE ONE-THIRD OF THE PLANET IS COVERED WITH DIRT. The Specialized Rockhopper Comp Mountain Bike— Getting Dirty Has Never Been This Much Fun.
SUNFLOWER
804 Mass. • Downtown Lawrence • 843-5000
ALL YOU NEED TO KNOW ABOUT PIZZA
842-1212
DELIVERY HOURS
2 - PIZZAS
1 - TOPPING
$600
Just ask for the #1 Special
Additional single
topping pizza- $3^{00}
Additional toppings .50¢
A "no coupon" special
Offer good through May 17, 1992
The University of Kansas Presents:
MON-THUR 11AM-2AM Open at 11am everyday FRI-SAT 11AM-3AM Dine-in available SUNDAY 11AM-1AM We accept checks!
EVERYDAY TWO-FERS PRIMETIME SPECIAL PARTY "10"
2-PIZZAS 3-PIZZAS 10-PIZZAS
2-TOPPINGS 1-TOPPING 1-TOPPING
2-COKES 4-COKES $30^{00}$
$9^{00} $11<sup>50</sup>
April 25, 1992
Place: Kansas Union
Time: 8:30 am - 5:00 pm
Free Admission
(Luncheon $5)
Sponsored by UJIMA
Co-sponsored by
HALO, ASiA and NASA
*Donations Appreciated*
ATTENTION KANSAS CITY STUDENTS
UMKC PUTS THE CHOOL BACK IN SUMMER SCHOOL
Going home to KC and want to keep working on your degree? No sweat. We'll give you special visiting student status that makes enrollment easier than ever.
Need to finesse coursework around your work schedule? No problema. We've got four-week terms, six-week terms and a catalog-full of courses going night and day.
Want to cool off between classes? Why not study poolside at our spectacular indoor-outdoor pool? Or stroll down to the Plaza or the Nelson and just hang out. At UMKC we try to take the sweat out of summer school and put the chool back in.
To find out more, please call:
(816) 235-1111
an equal opportunity institution