Human clinical trials to begin for drug that could lead to Sacramento-area teenager speaking for first time
New FDA-approved human clinical trials are beginning for a drug that could give a teenager the opportunity to speak for the first time. A Sacramento-area family is calling it a miracle.
This comes after she was diagnosed less than a decade ago with a disorder doctors say they had never seen before.
Jordan Lang is a 19-year-old girl who loves life and who now may soon get a chance to tell the world about it for the very first time.
"Yeah, I think it's fair to call it a miracle," her father said.
"We are just super elated," Jordan's mom said.
Jordan's mom and dad are now awaiting the FDA-approved human clinical trials for a pill that could treat Jordan's Syndrome, named after Jordan, the first person in the world known to have a rare neuro-developmental disorder.
"I think that Jordan will be able to say the things that she has not been able to say to us. She might have been thinking them, but I think now she'll be able to communicate them," Jordan's mother said.
Jordan's Syndrome is caused by a genetic mutation that interferes with cell and tissue function. For Jordan, her parents first identified her slowed development when she was a baby.
"One of the things we noticed when Jordan was 9 months old, is that she wasn't able to sit up. So one of the symptoms for Jordan's Syndrome is low muscle tone," her mother said.
Jordan wasn't able to walk until she was 5 years old.
CBS has followed the family's medical journey which now includes a community of advocates known as Jordan's guardian angels, focused on research and fundraising.
Doctors now believe up to 250,000 people around the world may have Jordan's Syndrome and have yet to be properly diagnosed.
For Jordan's mom and dad, seeking treatment has been a practice of perseverance.
"You just dive into the deep end of the pool and you learn as you go," her father said.
"I think the most important thing is to never give up," her mother said.
Now their anticipation is to hear Jordan finally express her joy.
The human clinical trials are set to begin next month and last an entire year.
