Addison

Moebius SyndromeAddison was born on December 4, 2014 in Long Island, New York. After Addison was born, she was whisked away to the NICU. Addison spent most of her life hospitalized. During her first three months, Addison was in four different hospitals. In addition to the abundance of testing (some of which were invasive), Addison underwent a tracheostomy to stabilize her ability to breathe and G-tube surgery to provide proper nutrition. Additionally, she completed serial casting for her bilateral clubfoot, followed by a tenectomy procedure on each foot. Addison finally arrived home in time for her 3 month birthday. After we were home, we visited Mounti SInai and met with Dr. Jabs who officially diagnosed Addie with Moebius Syndrome.

(more…)

Continue Reading

Adeline

Moebius SyndromeAdeline, and her twin sister Eliza, were born on July 1, 2014, in Portland, Oregon. Having twins was a complete shock to her father and me! My pregnancy was very healthy, but there was some time when Adeline was not showing the amount of expected growth, and so the doctors diagnosed Intrauterine Growth Restriction. She was always smaller and less active than her sister Eliza. The girls were born at 37.5 weeks. Adeline was 5 pounds, 2 ounces, and Eliza was 7 pounds, 4 ounces.

(more…)

Continue Reading

Alex Barker

People ask me all the time about my experiences of having a rare condition. I always answer that I’m fairly happy as I am. It’s the truth.

Who wouldn’t want to be born without a disability? Me…I didn’t have a choice. Everything or mostly everything that I’ve wanted to do is because I saw my peers doing the same thing and I though…Hey I could do that. I went off to college, university and had the opportunity to go and study in different countries. I even live independently. Well all my friends do so why can’t I?

(more…)

Continue Reading

Aiden

I’m 28, from Co. Kerry, Ireland and have had Moebius Syndrone since birth. Because of Moebius Syndrome, I cannot smile or move my eyes, my left hand is deformed and I had to have numerous operations on my feet as a child due to having clubbed feet. I did not let my disability deter me, however. I have gone to college and completed numerous home study courses, obtaining dilplomas of distinction in creative writing, freelance journalism and writing for TV & Radio. Two years ago I released a book of poetry entitled, A Viking’s Prayer -www.avikingsprayer.com and later this year, I will have my young adult fantasy novel, The Zargothian Tales (working title) published by an American publisher. 

(more…)

Continue Reading

Allie Johnson

My name is Allison Johnson and this is my journey so far on this earth. The day I was born the doctors diagnosed me with Moebius Syndrome. Moebius has affected…

Continue Reading

Benjamin

My son Benjamin, born Sept. 30th 2006, was diagnosed with Moebius at around two weeks of age. It has been a long road but so worth it. Benjamin is such a joy and blessing to our lives. He has also been diagnosed with another syndrome call VACTERL.

(more…)

Continue Reading

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.

(more…)

Continue Reading

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.

(more…)

Continue Reading

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.

(more…)

Continue Reading

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. 

(more…)

Continue Reading
  • 1
  • 2
Close Menu
×
×

Cart