'I decided to fight like a mother': One parent's battle to cure a disease so rare it has no name
Like a lot of people, she and her husband Mark had a hard time conceiving. But after two years of IVF treatments, the Denver couple got a double dose of good news: Amber was pregnant with twins."They instantly changed my life and made me so happy," Amber said.
"I just remember thinking that that wasn't the name of a disease. It was the name of a flight number," said Amber. "I could not understand what my perfect, beautiful little baby boy had, and neither could the doctors." She asked the doctors what they would do if Maxwell were their child. They told her to "call scientists."
But a phase one trial requires money. A lot of money. Amber needs another $3 million to-$6 million. And connections in the drug industry. And even if she can get a clinical trial started, there's never a guarantee any patient, including Maxwell, will be admitted.
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