Battling a rare disease…

Everett Prestenbach has a chromosome disorder so rare that there are only two known living cases. Despite the fact that 1 in 10 Americans suffer from a rare disease, very few approved treatments have been approved here due to lack of research. So like many other families battling rare diseases, the Prestenbachs hope to travel internationally to seek out a promising off-label treatment. Pictured above with mom and dad, Sarah (Patteson) Prestenbach and her husband Payton.

Prestenbachs pursue stem cell treatment for baby Everett

By Kayleen Holder
Editor
Roughly 300 million people across the globe are battling a rare disease, and about half of them are children. Battling a rare disease brings with it a unique set of challenges, as families are left to research and seek out off-label treatments–many times internationally. Such is the case for this South Texas family pursuing a stem cell treatment for their son Everett, 2 years old, who is living with a rare genetic disorder as well as spastic quadriplegic cerebral palsy.
The rare genetic disorder that baby Everett has is so rare that it doesn’t even have a name per say.
“It’s a chromosome abnormality,” said his mother Sarah Prestenbach. “Deletion of 5, and duplication of chromosome 7.”
Everett is one of only two known cases of…LOGIN TO CONTINUE READING at www.devinenewsmembers.com. You will get instant access to our full E-edition, and begin getting the newspaper delivered to your home next week for $36 a year in Medina County. Support important local city, county, and school news like this!