Olivia’s Story: a personal story from friends in Michigan, Kelly and Zach Sebastian

My husband, Jason, shared the newsletter, “A Little Something Extra: Opening a World of Opportunity for People with Down Syndrome,” with me this morning.  Our close friends, Kelly and Zach, are proud parents to the beautiful little girl, Olivia.  Kelly and Jason work together here in Michigan.  We’ve shared many celebrations and held hands tightly over tougher times.  
As fellow readers of this blog, most of those in the field of education, I know this story will touch your heart.  If you’d like to join me in helping to support this cause, please scroll to the bottom of this post for further information.  In advance, thank you for opening your hearts!
Here is the story of one sweet little princess, Olivia…
One Family’s Experience with Atlanto Axial Instability 
Our daughter Olivia is a 5 year old vibrant little girl with Trisomy 21. Diagnosed after birth, Olivia had no major health problems and we considered ourselves blessed. After she was born, we moved from Auburn Hills, MI to Grand Blanc, were she started attending school at the Genesee Intermediate School District at age 2. Olivia has acclimated well and was only receiving speech therapy at school due to reaching her goals in physical therapy. Last fall we welcomed our second child into the family, making Olivia a “big sis.” Around the same time, we noticed that Olivia was acting peculiar and becoming increasingly frustrated. Olivia currently only says about 50 words and struggles at communicating, especially feelings and emotions. We couldn’t tell if she was having a hard time adjusting to the new baby or if there was a deeper reason behind her sudden change in behavior.

We first noticed that Olivia was favoring her neck; holding it back and tipping it side to side. She would also cry whenever I put the slightest amount of pressure on her head and neck; specifically bathing and dressing, putting hats on and brushing her hair.  Around the same time, Olivia also lost her balance and fell down a flight of stairs, which was very abnormal for her. Olivia couldn’t communicate if she was in pain or felt discomfort, and after the fall, we decided to take her to the doctor who ordered an xray of her cervical spine. We were told the x-ray looked fine and although we were confused with the results of the x-ray, we continued to monitor her closely.

The weeks went by, and Olivia slowly began regressing and acting out of character. A little girl that used to get up, go down a flight of stairs and wake us up every morning, couldn’t even make it out of her own bedroom. I would find her lying on the floor in her room asleep. She could not turn the door handle or muster up enough energy or coordination to get back in bed. We also noticed that she was falling more frequently. We originally thought she was being stub- born, and her teacher and daycare staff also noticed the change in behavior. At school, Olivia would fall to the ground and start crying during the day when asked to participate. Our daycare provider informed us that Olivia had started separating herself from the other children, and would find a corner, sit down and cry. Olivia was still tilting her head back, and side to side and had started rubbing the back of her neck.

The last week at home before Olivia was hospitalized, she had extreme fatigue. Olivia would also have episodes where she would cry, out of nowhere, and the crying would last for only a few seconds. During the last week, I had to dress Olivia in bed as she would not stand up by herself.

Olivia has always been a tough kid, never fussy or temperamental, eager to please and very affectionate. She is the type of child who rarely cries and has a very high pain threshold. Although we were told the x-ray came back fine, we were starting to have our doubts as Olivia’s crying spells and other symptoms had us very concerned.

At her weekly Speech therapy session, Olivia lost movement in her right arm. When this occurred, we were called into the room, where Olivia was sit- ting down playing with toys. The therapist said Olivia
started crying out of nowhere and fell to the floor. She only cried for a few seconds, and then the Therapist noticed Olivia (who is right handed) was only playing with toys with her left hand. Her right arm was limp and cold and she was holding it close to her body as if protecting it. We decided to take her to the Pediatrician the next day.

The following morning, her condition worsened and we noticed she was experiencing weakness in both her right arm and leg. She could only take a few steps without falling and her balance was off. On the way to the Pediatrician, Olivia had another crying spell in the car, and then again at the office while being examined. The pediatrician failed to diagnose her properly and we had to take matters into our own hands. Fortunately, we found an opening at a Pediatric Neurology clinic near our home, and it took the Neurologist only minutes to detect that something was seriously wrong. Olivia was rushed to Mott’s children’s hospital where doctors initially thought she had a stroke and ordered an MRI, which inevitably spotted the spinal cord compression. At this point, Olivia could not move her right arm or leg and was in extreme pain.  Several days later, Olivia had an occipital cervical fusion and was placed in a halo and stayed in the hospital for several weeks undergoing rehabilitation. Shorty after she was discharged from the hospital, the halo was removed and replaced with a neck brace.

Olivia continues to do outpatient rehabilitation and she has 6 more weeks left in the neck brace. The Neurosurgeons at Mott’s are hoping her bones will fuse together before the hardware breaks down. Olivia requires 24/7 supervision and we try to restrict her movement as much as possible. She is able to walk and has regained mobility. During our last follow up, the physical medicine and rehabilitation doctor was very pleased and impressed with Olivia’s progress.

Looking back, the regression happened so slowly that we overlooked signs that normally would have been red flags. After the first xray came back “normal” we didn’t think the symptoms could be serious. Olivia had an x-ray of her cervical spine when she was less than a year old, and then again at 4 ½ years. We thought all our bases were covered as we have always followed our Pediatrician’s recommendations and guidelines for treatment and care.

The thought of Olivia being in severe pain for months and still being her sweet little self just makes us realize how special she truly is. It has been very hard for us to digest that she was in pain for so long without relief. The Neurosurgeon reported that these “crying spells” occurred whenever she looked down, and essentially shocked her body. The surgery itself was a risk but we had no choice. Had this gone undetected for a longer period of time, Olivia could have easily become a quadriplegic. We were so fortunate to have opportunity to get Olivia the care she needed, and we were at the right place and the right time.

We are very grateful that things have progressed so well and are happy to share our story. We hope that, by writing this article, parents with children who are showing any signs of symptomatic Atlanto Axial Instability (AAI) will take their children to the doctor immediately. It is important to note that Olivia was never diagnosed with AAI and had we known the diagnosis prior, it is possible we could have prevented her right sided weakness and the pain she endured.  However, not all symptomatic AAI cases are caught on xrays and it is imperative that you watch for signs and symptoms. It is very important for the x-ray to include flexion and extension views. Olivia was not diagnosed until we received the results from the MRI, and I would strongly suggest following up with a Neurologist and having an MRI done if you are seeing these symptoms in your child.

Classic symptomatic AAI symptoms include: neck pain or persistent head tilt, intermittent or progressive weakness, changes in gait pattern or loss of motor skills, loss of bowel or bladder control, increased muscle tone in the legs, or changes in sensations for the hands and feet.

For further information:
Click Here to visit the homepage: Down Syndrome Guild of Southeast Michigan
Click Here to read more about making a contribution/donation
Thank you for sharing your story with us.  Olivia will forever be in our hearts!


Mother. Teacher. Keynote. Author

Erin Klein is an award winning educator, national keynote speaker, author, and mother.

  1. What a precious little girl! I teach special education (kinders) and have students with Trisomy 21 and know how truly special these children are. They make my heart smile every day! Olivia is definitely in my thoughts and prayers. Thank you for sharing this story with us all in blogville! It is truly an inspirational one! :-)

  2. What a brave little sweet pea! Kudos to her parents for trusting their "gut feeling" that something was not right and not going with the opinion of the pediatrician who turned out to be wrong.

  3. What a sweet and beautiful child! I have taught special needs Kinders that were autistic, but never any with the needs of Olivia. God bless her parents and her. It is wonderful that God instills in us as parents and teachers a sense that something is not "right" and forces us to look further to help our precious children. her family and she are in my prayers!

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