Talynn was born early on January 27, 2014. At birth she was transported to Children’s Hospital of The King’s Daughters and spent 3.5 weeks in the NICU. We found out that Talynn was missing 2/3 of her Corpus Callosum. After leaving the NICU, Talynn stopped gaining weight and started having feeding difficulties. Talynn saw many doctors until we found the right team (12 doctors.) Time continued to pass and no one could tell me why Talynn wasn’t gaining weight, why she was developmentally delayed, why she had been hospitalized 5 times before the age of 10 months due to recurring respiratory issues, etc. The day came and we got a call from the Geneticist. She told us that they had a lead and were pretty sure Talynn had Bohring- Opitz Syndrome.
I started doing research and found that Bohring-Opitz Syndrome is an extremely rare genetic syndrome. There are approximtely forty known cases in the WORLD. This syndrome is diagnosed by genetic testing and is a mutation in the ASXL1 gene. The leading cause of death is respiratoy infections. Majority of children with BOS have feeding difficulites, recurring respiratory infections, sleep apnea, developmentally delayed, failure to thrive, abnormal hair density & length, Wilm’s Tumors, brain abnormailties, silent aspirations, and the list goes on.
On January 14, 2015, the genetic blood work came back and confirmed Talynn had Bohring-Opitz Syndrome. Currently, Talynn is the second youngest baby with BOS living in the United States. We do not know what the spectrum is due to only 40 cases in the world. Talynn continues to develop but at her pace. We will never let any of these labels define who Talynn is. She will always be Talynn and we will help her be the best she can be!
Learn more about Tara through her website: www.talynnsjourney.com.
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