O2 Crisis and Canceled Church Plans
Today we got up at 5:30 am, started our normal routine of getting showers, kids up, dressed and fed, Drake and Vivian’s meds and food...
NKH is an extremely rare, metabolic disorder caused by a mutation in a child’s DNA. The mutation/s cause the system that facilitates glycine breakdown, and utilization, to become incompetent.
Children with the severe form of NKH, comprising close to 85% of diagnosed,
often live days/weeks after birth.
Children live with severe seizure disorders, and a very poor prognosis.
Gene Therapy for Non Ketotic Hyperglycinemia, NKH
In 2019, the Drake Rayden Foundation partnered with the Steven Gray Lab at the University of Texas Southwestern, UTSW for a two year project, to create a gene replacement therapy for the terminal, rare disease NonKetotic Hyperglycinemia, or Glycine Encephalopathy.
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Gene Therapy offers a curative effect to many rare orphan diseases.