New medication gives 11-year-old boy chance for more normal life

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Thursday, September 29, 2016
New medication gives 11-year-old boy chance for more normal life
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An experimental drug has given an 11-year-old boy who suffers from a painful disease a chance to live a more normal life, thanks to Texas Children's Hospital.

HOUSTON (KTRK) -- Thanks to advancements in modern medicine, patients diagnosed with incurable diseases are getting the chance to live a more normal life. One case in point is an 11-year-old-boy from Huntsville who was diagnosed with sickle cell disease at birth. An experimental drug has helped him alleviate most of the pain associated with the disease.

Christian's story begins at birth.

His mother Christy Crawford told abc13 that "during his newborn screening, he tested positive for sickle cell SS."

It's a condition where abnormal red blood cells could lead to attacks of sudden severe pain. Crawford said his first pain crisis occurred at four months of age.

"We'd visit the emergency room maybe two times a month," Crawford said.

Dr. Amber Yates is the co-director of the Sickle Cell Program at Texas Children's Cancer and Hematology Centers. She said, "Sickle Cell disease is a disease that's inherited."

When both parents have the sickle cell trait, the child has the potential to have the disease.

"Both my husband and I have the sickle cell trait. But my children are the first in the family to have the disease itself," Crawford explained.

In order to negate specific medical risks, patients receive blood transfusions.

Dr. Yates said, "You come every month to our center and get a blood transfusion to protect the brain and to prevent you from having a stroke."

The problem there is every time a patient receives a transfusion, they're also getting a dose of iron.

"Eventually you end up with iron overload and you need medicines to get rid of that," Dr. Yates explained.

But that changed when Christian met the criteria to be selected in a medical study involving a new medication called Hydroxyurea. Its purpose was to reduce the frequency of painful crises and limit the need for blood transfusions

Crawford said, "We went through the process of weening him off the monthly transfusions, then transitioned into taking medication once a day in place of the transfusion."

Christian has been on the medication for about five years now. So far, it's been a good solution for him.

"At this point, our frame of thinking is he stays on this medication until there's something better. But right now this is the best option for us, because it works," Crawford said.