Talynn Gurganus was born at 35 weeks on January 27, 2014.
At birth, she was transported to Children’s Hospital of the Kings Daughters and spent 3 ½ weeks in the NICU.
Over the first 11 months of her life, Talynn demonstrated the following symptoms:
● Missing part of her brain (P-ACC)
● Feeding difficulties (G-tube fed)
● Very slow growth (failure to thrive)
● Developmentally delayed
● Birthmark (flammeus nevus)
● Nearsighted (myopia)
● Prominent eyes
● Low muscle tone (hypotonia)
● Recurring respiratory infections (pneumonia)
● Silent aspiration
● Unable to communicate verbally
● Multiple hospitalizations
● Sleep apnea
● Abnormal hair density and length
We went through many doctors until we found the right team of twelve. Finally, the day came when we got a call from our Geneticist. She told us she suspected that Talynn had Bohring-Opitz Syndrome.
Bohring-Opitz Syndrome is an extremely rare genetic syndrome.
This syndrome is diagnosed by genetic testing and is a mutation in the ASXL1 gene.
The leading cause of death is respiratory infections.
Follow Talynn’s Journey @talynnsjourney.
The portable activity kit. Fun therapy at home or on the moveFind out more