HOUSTON, Texas (KTRK) --It is a parent's worst nightmare.
Sarah Hughes was just 11-months-old when her parents learned of the rare congenital disease that would steal her childhood and later, her independence as a young adult.
"I spend a long time in the hospital -- pretty lonely," said the now 26-year-old Hughes of her systemic juvenile idiopathic arthritis, an auto-immune disease with no known cure.
"The arthritis went after my C1, C2 -- basically that's the portion that holds your head onto your neck," Hughes explained.
With painful, swollen joints, she couldn't walk. Unable to absorb the nutrients fed to her by her feeding tube, Hughes dropped down to 82 pounds. Her diet was made up of 23 medications plus high doses of chemotherapy.
"They were starting to talk to me about keeping me comfortable," she recalled of conversations between her parents and her team of doctors and specialists.
Unwilling to give up, her mother, Fiona, exhaustively researched other options including stem cell therapy. Her mother eventually met Houston-based Dr. Stanley Jones, co-founder of Celltex Therapeutics.
"We extract stem cells from the fatty tissue," said Dr. Jones to clarify any controversy of where the cells come from. "We select these stem cells so they grow more robustly and then we culture them into the hundreds and millions."
Jones said stem cells are a secret weapon and can be used to treat and prevent diseases.
"Stem cells can become bone, cartilage, nerve, muscle, skin," Jones said.
Once cultured and transferred to a patient, Jones said stem cells "can become other tissues and the body can call on that cell to become what is needed."
The United States Food and Drug Administration regulates the Celltex lab in Houston where Dr. Jones can culture a patient's stem cells. To perform the actual transfusion therapy, Sarah Hughes had to travel to Mexico, a country that has approved Celltex's therapy. Currently, the USFDA still considers stem cells an unapproved drug in need of further study.
According to the FDA:
"Stem cells, like other medical products that are intended to treat, cure or prevent disease, generally require FDA approval before they can be marketed. FDA has not approved any stem cell-based products for use, other than cord blood-derived hematopetic progenitor cells (blood forming stem cells) for certain indications."
"America needs to wake up and get with it," said Jones of the current status of stem cell therapy. "People are getting better elsewhere and we're not able to treat our own people as we should be able to."
Those people -- people like Sarah Hughes -- said their health transformed within just a few months.
"I reclaimed a life I didn't have," Hughes said.
Hughes is now well enough to ride her beloved horses and even attend this year's State of the Union Address as both a guest of Texas U.S. Representative Pete Olson and a living example of the power of stem cells.
"It's really good to advocate for other people to have life-saving therapies in the United States versus having to leave the United States," said Hughes.
From planning her funeral to planning her wedding in just the past few years, Hughes will marry this weekend.
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