Stories from the Global Moebius Syndrome Community.

Brianna Brockner

Brianna was a beautiful baby who brought joy to everyone who had the pleasure of knowing her.  Unfortunately, Brianna passed away when she was just 14 months old.   Brianna still accomplished much in her short life. She was on her way to sitting unassisted, could do ten signs and knew lots of other words, played with her toys, turned pages in books, rolled over from her back to her tummy, played with her toes, and was very smart. She learned something new every day and made everyone around her very happy. Her life was full of love and she is greatly missed every day.  We hope you’ll take a moment to read about her life and learn a little more about Moebius Syndrome.

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Brooklyn

Brooklyn Clarke
11/29/07- 6/14/08

Hello everyone, my name is Lucy, I am Brooklyn’s mommy.

When I found out I was pregnant with my little Bee, I was overjoyed, but as my pregnancy progressed, things started to get a little scary for me. During my 6 month ultrasound, the tech started acting very suspiciously, and said “I will get the doctor to come in and speak with you” and practically ran out of the room crying. I was terrified, and after the doctor came in to speak with me, was not any less worried. They had found fluid build up in Brooklyn’s kidneys, and that she had a clubfoot. This being my first pregnancy, I rushed home and did hours of research, only to be reassured that at least her foot was something that could be corrected.

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Caleb Downs

Ronnie “Caleb” was born on September 6th , 2004 in Shelby North Carolina. He wasn’t an early delivery, he was due on September 9th . It was obvious to the doctors that something was wrong with him (smaller jaw, no eye movement) but they didn’t have time to worry what it was at that time; he wasn’t breathing good on his on and the doctors made the call to the NICU at Levine Children’s Hospital in Charlotte some 60 mile east. Mind you the situation was an overload to his mother and I, we’d just had a baby, and we didn’t get to spend a few minutes with him till they were taking him away to Charlotte alone. Once my parents and I arrived at the other hospital the charge nurse allowed me to stay with him even though it was shift change and no visitors were suppose to be there.

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Christine Soldano

Hello my name is Christine Soldano. I am 59 years old. Wife,Mother,second generation Momma I am raising my three year old grandson. And I have Moebius Syndrome.

I was born n Chicago Illinois at Laura Ingalls Hospital on April3rd 1960.The doctors knew immediately there was something “different” I don’t use the word wrong because to me I am I have the same heart,mind and soul as anyone else. I was born with two club feet. One was surgically repaired and the other I wore a brace for years and it is straight. I didn’t walk untill I was around two.I also had crossed eyes. My Mom fed me with an eye dropper because I was unable to nurse.The doctor’s was lost they never gave my Mom a diagnosis and didn’t expect me to live.My parents didn’t know what to name me. My Mom actually named me after a loving nurse who cared for me. It wasn’t until the internet that I discovered the word Moebius.

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Dakotah

Dakotah was born on October 15 2008 via an emergency C-Section. I was my daughters birthing coach. On October 15th we checked in for what was to be a normal delivery. After 15 hours in labor and Dakotah’s heart rate dropping several times over the course of the day it was decided that a C-Section was necessary. When Abbie was taken into the delivery room I sat patiently by her side and watched and they worked on her. The Dr. was having a hard time getting Dakotah out, her head was stuck in Abbie’s ribcage, she was breach. Out comes this beautiful baby with tons of black hair. She was very quiet and didn’t cry. As they took her over to check her out I noticed that her eyes were extremely large and that she just stared, she didn’t blink at all. I noticed that her lip was droopy as well. The doctors checked her heart and did the basic APGAR tests that they do on a newborn but that was about it. Abbie and Dakotah were taken into the recovery room. While in recovery we tried to get Kotah to latch on, she was unable to do so. I started looking at her mouth and noticed that it did not open very far, almost as though her jaw was locked.

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Damian Frances Rodriguez

After enduring weekly sonograms for the last month and a half of my pregnance, and only being told I was carry a large baby, Damian Frances Rodriguez was born by c-section on February 11, 2011 weighing 9 pounds 15 ounces, a big baby indeed! My husband and I only briefly noticed there was something wrong with his hand before he was whisked away to NICU for breathing difficulties. I was not able to see him for an entire day. When I was finally allowed to go to the NICU, I noticed all of the tiny preemies and then saw Damian – he looked like a Sumo wrestler compared to all the other NICU babies! My family was busy researching what could have caused his small hand while the hospital staff told us nothing except all our speculations were wrong. His left side was comprimised somehow, but the doctors did not know why. My mother recall, however, staring into Damian’s big beautiful eyes and having the strongest feeling he wanted to smile but of course, was too young. Now we know he never will.

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Daniel Norman

Daniel is seven years old and the youngest of our six children.   My pregnancy was normal, however the delivery was rough and he died after he was born and needed to be resuscitated. Doctor’s could tell he didn’t “look” normal and while the doctors had lots of questions about him, they didn’t have any answers for us.

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Daniel Preston

Daniel Preston is my youngest son. He is 13 years old and is a vibrant and energetic, albeit at times shy, young teenage boy. He was born with Moebius in 1997. At the time of his birth we really had no idea what Moebius was, or that it was indeed what Daniel had. Upon his birth he was whisked away from us and we were told he had no vocal usage and no facial muscle usage. He had less then normal movement in his limbs, and although everything seemed to be working just fine the doctor’s feared he would be a vegetable for life. He confounded the doctor’s the day he was born. Daniel could not close his eyelids and he didn’t produce enough moisture to keep his eyes from drying out. His mouth did not close and his jaw was recessed quite a bit. His ears were tilted back more and were smaller then normal and his nipples were farther apart then normal. Daniel was also allergic to his own urine and had to be changed quite frequently. On top of all that he had a congenital kidney problem that might need surgery very soon. We left the hospital with our newly born wonderful little boy not knowing what would be in his future, or ours for that matter. 

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