“Your son Raghav has a rare mutation in a gene called GPX4,” said the voice on the other end. “So rare, only two other babies in the world were known to have it. So dangerous, both the babies passed away within 30 days after birth. Your son is doing much better.”
Several thoughts started racing through my mind as I continued to smile for the birthday photos:
“I should just get through this party without having a meltdown.”
“If it is so rare, it may not be as serious as I think it is.”
“What if someone finds out about Raghav?”
“It is 2019. How can this condition not have a cure?”
“Why me? Why me? Why me?”
The world continued to feel out of control for several months, it felt unfair. I hoped for it to be a bad dream, but if only I could sleep. A sleepless night and a long conversation with my husband narrowed down two choices:
#1 Give up and have “Why me?” mantra play in the background
#2 Take it by the horns and kick the beast in its butt
We went with the latter. #1 was boring anyway! Mission Cure Raghav was born. We decided to find a cure for Raghav. We decided to be his miracle. Our project has unreasonable timelines, an expensive budget and two members with absolutely zero background in science. But we have a plan, sort of.