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Save Hundreds of Infants and Children's Lives in a matter of SECONDS with this one machine

This petition had 708 supporters


  Our son, Drake Rayden OSullivan, was born with Nonketotic Hyperglycinemia (NKH) in October 2016.  Drake was three days old when he was placed on a vent and he was not expected to live past the first week.  Drake's body has a genetic mutation that prevents his body from breaking down the enzyme glycine efficiently.  His body in turn, stores the enzyme, and his glycine levels sky rocket to dangerous levels that filter into his brain and cause massive seizures that do not respond to seizure medications.  

   There are ways to eliminate the excess glycine but it all hinges on being able to monitor the levels of glycine in the blood.  Currently there are only 2 labs in the USA that can test amino acids.  It takes a minimum of one week to have labs drawn, tested, and results relayed to us for Drake. Some parts of the world it takes weeks for this same testing. This means days of uncontrollable seizures and hours of pain for our son.  Please help make this machine a reality.  It is the same concept as checking glucose for diabetics.  There have been positive trials of making the test available with a simple heel prick on a dried blood dot like a newborn screening panel.  

  We are asking companies to help us make this "at home glycine meter" a reality for our son and many other children that need a way to monitor enzymes in their body.  This test could literally change the course of NKH and many diseases like it.  This test could also be used at every hospital worldwide because even the hospitals do not have a way to test enzymes and they too have to send these test out to participating labs.

   Please help us save Drake, and other children across the globe, from pain and complications that can be monitored within seconds and give them a better quality of life.  God is bigger.



Today: Tarah is counting on you

Tarah OSullivan needs your help with “support@biomarin-rareconnections.com: Save Hundreds of Infants and Children's Lives in a matter of SECONDS with this one machine”. Join Tarah and 707 supporters today.