Dasa Gain has endured something no mother should ever have to face - the death of a young daughter and a race against time to save another.
When I first met Dasa at the end of 2009, I was touched by the young mother whose oldest daughter, Mikayla, was suffering from Alpers' Disease, a neurodegenerative disease of the brain that affects children.
Wracked with constant seizures, Mikayla spent weeks at Cook Children's Hospital in Fort Worth, where Dasa remained at her bedside talking to doctors and researching options.
Our conversations were usually brief, squeezed in while Mikayla was sleeping or resting peacefully.
Dasa had done so much research on her daughter's condition that she could tick off medical terminology like a pro. There wasn't anything about Alpers' Dasa didn't understand. She researched the disease, spoke with various experts and reached out to other parents caring for children with the same disorder.
She blogged about her daughter's journey and led a rallying cry to fund research to find a cure.
Over the course of several months, Dasa and I spoke countless times and formed an uncommon bond. I was amazed at her steadiness, her calm in the face of the unthinkable. I marveled at her composure and wondered if I could be as poised if I were facing a similar circumstance. I doubted it.
I followed Mikayla's story from start to finish and attended the funeral of the angel-faced girl I still vividly recall lying in bed in her Tinkerbell-inspired bedroom trying to blow bubbles.
As if losing one daughter wasn't enough pain, Dasa is now in a race against time to save her middle child, Morgan, whose Alpers' diagnosis came shortly after Mikayla's.
Dasa and I don't talk much anymore. She lives in Dublin where she is busy caring for Morgan and her youngest daughter, Madison. I've moved on to different stories, but I think of Dasa, Mikayla and Morgan often.
So I was pleasantly surprised last week to get a message from Dasa on facebook, where she told me that Morgan was being considered for a trial for a new drug recently approved by the FDA.
I immediately sent her back a message wishing them well and asking her to let me know if Morgan gets accepted.
On Monday morning, my phone rang.
"She got in!" Dasa said. "I couldn't wait to tell you!"
Dasa explained that Morgan was approved to travel to Stanford in California, where she will become the first Alpers' patient to take part in an EPI-743 drug trial.
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.
"This is the same drug we tried to get Mikayla on, but it was too early," Dasa said.
Patients suffering from other mitichondrial diseases similar to Alpers' who have been teated with EPI-743 have shown vast improvements. Dasa is praying the drug will save Morgan's life.
"They won't use the word 'cure,' but it has helped children suffering from Huntington's Disease," Dasa said.
This week, the family will load up their car and travel to California where the 13-week trial is scheduled to begin March 13.
It is the last - and best - hope of saving Morgan's life.