Morgan Gain couldn't stop staring out the window as the plane she and her mother, Dasa, were traveling on soared into sunny California Monday.
Just one year earlier, Dasa was making funeral arrangements for her oldest daughter, Mikayla, who passed away on March 20, 2010 after succumbing to Alpers' Disease, a fatal, neurological disease of the brain that affects children.
The flight into California was the first big step in the frantic attempt to save four-year-old Morgan from the same disease that claimed the life of her big sister.
As the mother/daughter duo landed in California Monday afternoon, Dasa watched as Morgan scooted close to the window and peered into the blue sky, riveted by the rugged mountains that dotted the landscape.
At that moment, Dasa hoped for only one thing: a miracle.
"When we got off the plane, I wanted to kiss the ground," Dasa said Tuesday. "I have waited for this for a long time."
Indeed, the road to save Morgan's life has been a difficult one, filled with disappointment and false hope.
But all that vanished when Morgan became the first Alpers' patient approved to take part in a 13-week experimental study using a drug recently approved by the FDA.
EPI-743 is a compound that has been developed for rare childhood mitochondrial diseases like Huntington's Disease and Alpers' and is produced by Edison Pharmaceuticals.
The study is taking place in Stanford, where Dasa and Morgan are meeting with leading mitochondrial specialists from across the country who are overseeing Morgan's treatment.
Dasa said doctors won't use the word "cure," but are cautiously optimistic the drug could help reverse Morgan's symptoms and extend her life.
Edison Pharmaceuticals is so hopeful, in fact, that they are paying for travel expenses associated with Morgan's treatment.
"It feels good to know they are confident enough in the drug to front the money for her treatment," Dasa said.
Morgan will meet with doctors and undergo testing today and Thursday before receiving her first treatment on Friday. Then, they will board another flight back to Texas and head home to Dublin, where Dasa hopes the drug not only saves Morgan's life, but gives hope to others suffering from Alpers' Disease.
"Even if it doesn't help Morgan - and I pray to God that it does - she is doing this for the greater good," Dasa said.