Updates
This is a first! Seattle Seahawks player @Malik Turner tweeted about Raghav. He will be wearing custom cleats during the game to support Raghav and other rare disease fighters out there. This is hope through the power of sport!
#WetackleRare #uplifting #seahwaks #GPX4 #cureraghav
So Unique, We Were Told He Was the Only One
My husband and I were getting ready for the first birthday party of our son, Raghav. Perfectly color coordinated balloons, cake, carefully picked sprinkles and matching outfits – we wanted it all perfect for our first kid. As we were getting ready to cut the cake, I got a call from the genetics department at Seattle Children’s hospital. Little did we know there was an unplanned twist to the party.
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.”
My baby found a rare treasure.
So rare, nobody has seen it. So dangerous, two people died trying to find the treasure. Four hours after the baby was born, doctors came up to me and said “Your son is different”. Doctors examined him in the hospital for twenty three days but couldn’t find why. Specialists spent one year conducting all kinds of tests on him, but couldn’t find why.
Big break came on his 1st birthday.
My wife and I had organized a Finding Nemo themed outdoor birthday party on a beautiful sunny afternoon. As we were getting ready to cut the cake, I got a call from the Genetics department at Seattle Children’s hospital.
“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”
“Your son is doing much better” almost sounded to me like “Is your son still alive!?” — Words, every parent is eager to hear during the first birthday party.
