On February 7, 2012,  WWL-TV, the CBS affiliate in New Orleans, reported on Christian Billingsley, a 17-year old boy diagnosed with atypical hemolytic uremic syndrome (aHUS) at 3 months of age.

Online Story

(click on title/link above to see WWL-TV video)

Doug Mouton / Northshore Bureau Chief

February 7, 2012

ABITA SPRINGS, La. — A medical breakthrough is making a normal life possible for a Northshore teenage with a rare disease. Seventeen-year-old Christian Billingsley has Atypical Hemolytic-Uremic Syndrome, which is usually referred to as aHUS. For now, Christian’s young life is dominated by kidney dialysis. An in-home dialysis unit sits permanently in his bedroom. Christian is hooked to the unit six days a week, for three to four hours at a sitting. “It’s painful getting on, and sometimes, because of the way fluid comes off your body I can get cramps while I’m on it,” Christian Billingsley said. “That can be painful too.” For a high school sophomore, daily dialysis makes having a normal social life virtually impossible. Often, Christian gets home from school, starts homework, gets on the dialysis machine, and by the time he’s finished with dialysis, it’s time for bed. As inconvenient as it is, that dialysis machine is literally keeping him alive.

The Family Journey

Christian is now the oldest of Gene and Aida Billingsley’s three children, but before 14-year-old Gabrielle and 8-year-old Brandon were born, Christian was already suffering effects from his disease. The family journey began when little Christian was only three months old, with a huge bout of projectile vomiting. “And he broke out in little bruises all over his body called petechiae,” Gene Billingsley said, “it literally looks like a rash over the whole body.” By the next day, the Billingsleys had a diagnosis, and their fight against aHUS had begun. The disease causes clotting problems and often attacks the kidneys. And the Billingsleys quickley learned of the recurring nature of aHUS. “We’d be in the hospital two weeks, we’d come out, we’d be home a week,” Gene Billingsley said. “It’d come back.” Eight months after the initial diagnosis, Christian’s kidneys went into failure, and he was put on dialysis for the first time.

When Christian was two, Gene Billingsley donated one of his kidneys to his son, with the hope that the new kidney would cure Christian’s problems. Gene Billingsley said, they also had realistic expectations, and knew that even if the kidney didn’t help in the long term, it would benefit Christian’s development short term. And it did, Gene and Aida said. Their goal with their young son was simple: keep him alive and do anything they can to keep him as healthy as possible, until medical science caught up with their son’s disease. The replacement kidney lasted just six months before failing. “So we were completely out of the option of another transplant,” Aida Billingsley said. “He was on dialysis indefinitely.” Christian was surviving, but on a medical rollercoaster. “We would do ok for a year or so,” Aida Billingsley continued, “then we would have some complication, something big happened, and we’d be in the hospital for months at a time.”
The lowest point came not long after Katrina, in late 2005, when Christian was near death in a Memphis hospital. “He was massively infected,” Gene Billingsley said. “All his organs were shutting down.” “The sicker he got, the less he wanted to fight. He was very discouraged, I guess,” Aida Billingsley recalled. “It just got to the point where he wasn’t interested in doing what he needed to do.” Christian survived that near death episode, and it wasn’t the only one. “Five times where the doctors have said, it’s touch and go right now,” Gene Billingsley added.

The Breakthrough

Then in September 2011, the Billingsleys got the medical breakthrough for which they had been waiting. The FDA approved a drug called Soliris, and medical science had caught up. “We did it,” Gene Billingsley said. “This drug takes away all the issues that come up with HUS.” Since getting on the drug, Christian said he feels, “Amazingly different.” He’s healthier now than at any point in his live, and the Billingsleys expect soon, possibly within the next month or two, that Christian will be able to get back on the kidney transplant list. “It would be a miracle in Christian’s life, absolutely,” Aida Billingsley said. The possibility of getting off daily dialysis means Christian can now consider college choices all over the country. “I can go anywhere,” Christian Billingsley said. “It’s like the whole country, like I had a couple little dots on it, and now it’s all lit up.”

For the first time in his life, he said, he feels almost normal. “It’s amazing,” Christian Billingsley said. “I never doubted we’d be in this spot,” Gene Billingsley said. “I just had it put on my heart, in the first couple months that he’s going to be all right.”

Six years ago in Memphis, it didn’t look like it, but now, it does.


Thank you WWL-TV for allowing us to re-print your article!


RAISING AWARENESS FOR Atypical Hemolytic-Uremic Syndrome (aHUS)

4 thoughts on “Christian Billingsley – Atypical Hemolytic Uremic Syndrome (aHUS)”

  1. Your story is truly heroic! Christine will be in my daily prayers for continue health and well being with the opportunity to enter the college of his choice. Your strength and courage is inspiring for all of us living with a rare disease.

    Cryoglobulinemia Vasculitis
    God bless your family.

  2. Miracles in medical science can happen.i hope a cure for NKH can be found.it killed our daughter at 6 days old x

  3. Ellen Crompton says:

    Hello as a small toddler I had regular HUS. Thank ypu for sharing your strength.

  4. Staciir says:

    My prays are with you… my sister has atypical HUS.

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