Talynn

Talynn Gurganus was born at 35 weeks on January 27, 2014. At birth, she was transported to CHKD and spent 3 ½ weeks in the NICU. Over the first 11 months of her life, Talynn demonstrated the following symptoms: missing part of brain, feeding difficulties, very slow growth, developmentally delayed, birthmark, nearsighted, prominent eyes, low muscle tone, recurring respiratory infections, silent aspiration, unable to communicate verbally, multiple hospitalization, sleep apnea, and an abnormal hair density and length.

On January 14, 2015, the genetic blood work came back and confirmed Talynn had Bohring-Opitz syndrome. Talynn’s first year of life was her hardest, but now that we know that she has BOS, it helps us better prepare for the hard days. Since Talynn’s diagnosis, the only additional symptom she has developed is seizures. Talynn continues to develop but at her own pace. We will never let any of these labels define who she is. We will help her be the best she can be!

~Taylor, Talynn’s Mom

Bohring-Opitz Syndrome

Bohring-Opitz syndrome is a malformation syndrome characterized by severe intrauterine growth retardation, poor feeding, profound mental retardation, trigonocephaly, prominent metopic suture, exophthalmos, nevus flammeus of the face, upslanting palpebral fissures, hirsutism, and flexion of the elbows and wrists with deviation of the wrists and metacarpophalangeal joints.

Artist: Marie Jones