Welcome to ERP's Earth
A Rare Journey Guided by His Angel Brother
ERP's Earth is the story of Ethan Ray Priest and his journey with Menkes Disease. A journey that has been sacredly guided by his angel brother Xander, who also had Menkes but sadly gained his wings in 2011 at just 11 months old.
Menkes Memos
Menke disease is a neurodegenerative metabolic disorder caused by mutations in the ATP7A gene located on the X-chromosome. This rare X-linked recessive disorder of copper metabolism, primarily affects male infants.
Infants with Menkes disease may appear healthy at birth but typically develop symptoms around six to eight weeks of age. These symptoms include floppy muscle tone, seizures, failure to thrive, and strikingly tangled hair (colorless or steel-colored) that breaks easily.
Menkes is considered a terminal condition, and no cure is available. A clinical trial/investigational study in which Ethan has been participating since he was 6 days old has shown great success for many in slowing the progression of the disease when started shortly after birth, and is currently undergoing the FDA approval process.
Meet Ethan Ray (ERP)
Prebirth
The Start of ERP's Journey
The Start of ERP's Journey
The passing of our first Menkes son, Xander, in 2011 was most devastating, however, it was that loss that allowed us to offer Ethan chances he may not have had otherwise. After learning that we were having another boy, through an amniocentesis, we were able to get Ethan's diagnosis many weeks before his birth. This allowed us to set Ethan on the best path possible right from the start.
The Start of ERP's Journey
The Start of ERP's Journey
The Start of ERP's Journey
After a perfectly normal and healthy pregnancy, Ethan started his journey earth side and at just 6 days old he started receiving subcutaneous injections of copper histidinate twice daily via an investigational study. This clinical trial has shown the best results when it is started very early and with it the life expectancy of those with Menkes increases from 3 to 13.
The Start of ERP's Journey
We offer a variety of programs and services to meet the needs of our community, including emergency financial assistance, job training, and healthcare services. Our goal is to empower individuals and families to become self-sufficient and thrive.
Menkes Research
Though rare, the prevalence of Menkes has soared in the last few decades warranting the need for more research into cause and potential treatments for this devastating disease.