Hello everyone! We have finally released our first video, chronicling the 17 years Christian has fought hard against this terrible disease.
I actually started this video in February of 2008 but could get no further than 104 seconds into the song. I think you'll see that truly this video was not capable of being finished until now... with the amazing developments over the last few years.
Please enjoy the song and enjoy the video.
I am hoping to release a separate video to celebrate Rare Disease Day this Wednesday! The HUS community is working to post videos from all over on Wednesday and I sure hope to finish our entry in time.
Please talk up Rare Disease day to your friends and family - raising awareness of those struggling with lifelong disease and bringing hope that they, like our son, can find comfort and cures. That is the essence of the global highlighting of Rare Disease Day.
Lastly, Christian, Aida and I will be traveling to Connecticut to the home office of Alexion Pharmaceuticals to speak on Wednesday at Rare Disease Day events. Look for some updates later this week on our travels!
'Just keep him alive until medical science catches up'
Doug Mouton / Northshore Bureau Chief
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.
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.
That is the theme for the 5th Annual Global Awareness campaign highlighting Rare Disease Day.
Christian’s Conquest will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29. The purpose is to focus attention on the needs of patients and families affected by rare diseases.
Please visit www.rarediseaseday.us and follow us here at Christian's Conquest this month as we bring news of not only our journey with rare disease but others whose lives have impacted thousands through a series of announcements and videos.
And here's the first: A Rare One, recorded for The Foundation for Children with Atypical HUS by the Tricky Britches, enjoy!
Alot of emotion with this post today... Christian has turned 17. I can remember vividly Dr Phillips at NOCH telling us there was a real chance he would not make it to 5. And the several more times when not making it was way more probable than making it.
Yet here we are. Faith and miracles worked through the vessels of men, women and science have Christian on the doorstep of Life v2.0. We have a soaring heart of joy for our son and a heavy heart of resolve for those we have known intimately along the way whose child's birthdays are celebrated in spirit only.
It was family time today. A good day. A good day, indeed.
Next up: Mom and Christian will be leaving SuperBowl Sunday for the next Houston trip. A 7:30am ultrasound workup is scheduled, followed by consultation and the bi-monthly Soliris infusion.
Also, look for an exciting announcement early next week as Christian's Conquest begins promotion of Rare Disease Day which is slated for Feb 29th this year! Check back soon and please get involved with us in this grass roots awareness campaign.