Grayson

My biggest advice to families going through this, whether you have been living it or are just beginning this journey, is to never loose hope. Grieving a living child is real and raw. It’s frustrating. It’s shattering, at times it feels unbearable. But never loose hope. Take it day by day, minute by minute and sometimes second by second. I often tell others that Grayson made me more human and alive than I could have ever dreamt of. I think I needed him more than he will ever need me.

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Taylor GurganusMarch 14, 2025 Comments

Sienna

Taylor GurganusApril 11, 2021 Comment

Eva

“Since we have known what syndrome our little angel was affected with, we have been even more admirative and proud of Eva, and of her fight. But we do not understand why our children must experience this. We are sure of one thing : Eva has transformed us forever and has filled us with love, not only us the parents, but also all those around her. She positively changed our vision of life and of the afterlife, forever. “

Taylor GurganusAugust 20, 2019Comment

Theo

Despite the many medical challenges that Theo has faced, he continues to be a happy child. He has a very sweet and energetic personality. He loves anything with lights and music and is always smiling and laughing during his periods of health. Theo is overcoming his vision and hearing loss by working hard through his many therapies.

Taylor GurganusApril 13, 2019 Comments

Daniel

The doctor indicated that Daniel’s presentation fit mitochondrial disease and dismissed his dysmorphic features as nonspecific. We had our answer . . . or so we thought. At age 18, the testing came back, we finally had an accurate answer as to Daniel’s genetic status. He had Bohring-Opitz Syndrome.

Lori FultonApril 1, 2019 Comment

Lindsay

Taylor GurganusFebruary 23, 2019 Comment

Campbell

The area she struggles with most is seizures. In 2012, Campbell had a prolonged seizure (status epilepticus) where she suffered hypoxic brain damage after undergoing CPR for 20 minutes. Some of her current symptoms and level of function are a result of the hypoxia versus BOS. For example, she was hypotonic (low muscle tone) prior to the seizure and now is hypertonic (high muscle tone). She also received a tracheostomy due to her airway collapsing when they attempted to wean her off the ventilator.

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Taylor GurganusAugust 20, 2017Bohring-Optiz Syndrome, BOS, Special Needs, ASXL1, Rare Disease Comment

Ben

Meeting my baby for the first time wasn’t at all what I was expecting; his eyes were bulging his head was a funny shape and nearly twice the length it should have been… I was in shock… Where was my perfect new-born baby? I was assured by the nurses that everything was ok, he was just born quickly and that it would all go down. Once my family had gone to give me some rest I was left to hold my baby wondering what had happened, what had gone wrong and how long it would take for him to look normal??

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Taylor GurganusAugust 13, 2017Bohring-Optiz Syndrome, BOS, Special Needs, ASXL1, Rare DiseaseComment

Rosemary

Rosemary is now 27 years old! She is a very social and happy girl! She is non-verbal, but can make some of her needs known to us through gestures and vocalizations. She is able to eat and finger feed herself most foods. She can make choices when given the opportunity to do so. She sits up on her own and crawls on her own!

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Taylor GurganusAugust 6, 2017Bohring-Optiz Syndrome, BOS, Special Needs, ASXL1, Rare Disease Comments

Vaughan

Taylor GurganusDecember 15, 2016 Comment