Bryson's birthday is Nov. 8, 2012. 

Bryson was hospitalized 4 days after he was born for jaundice and stayed for three days, home for one and admitted again for 2 weeks. He had jaundice and his heart wasn't functioning properly. 

On December 3, I found him blue in the car seat and he was rushed to Parma Hospital and then transported to Akron Children's Hospital where he stayed until January 22, 2013. During his hospital stay at Akron Children's he under went a lot of testing and was in the PICU for most of his stay. 

We found out that Bryson had obstructive and central sleep apnea, congenital heart disease, low muscle tone, an intraventricular hemorrhage of the brain (grade 1), dysphagia, large ventricles of the brain, Pierre Robin's Syndrome, disease of the larynx, abnormal brain and nervous system development and has many frequent respiratory infections. Bryson has been through two different surgeries. 

On December 22 he had a G Tube, Nissen, Bronchoscopy, and Mandibular Jaw Distraction Surgery. Bryson had a G Tube and Nissen put in because he was aspirating his food. Bronchoscopy to check his larynx and voice box, and the Mandibular Jaw Distraction Surgery because he was born with a small pointed jaw that was set back and with low muscle tone his tongue would flop back when he would sleep and cut off his airway. 

Bryson is a miracle! Matt and I were told by the doctors that they were not sure he would live. He coded at the hospital and was watched very closely. Doctors told us they could not trust him because he would take a turn for the worse in no time. 

Bryson is 1 year and 3 months old now and has a very busy schedule. He goes weekly to speech, physical and occupational therapy along with many doctor appointments with his pediatrician and specialists. He just recently got glasses.
Bryson has a Facebook page called 

Bryson's Prayer Page, Check it out!

    

 The Sotos Syndrome Support Association is a nonprofit organization created in 1988 by the parents of individuals with Sotos Syndrome.  Decades later this organization is still run solely by volunteers.

If you are interested in getting involved or just want more information about the following volunteer opportunities, please contact us at president@sotossyndrome.org

Newsletter Journalist

This person will help our newsletter editor keep our SSSA NOTES interesting and valuable to our members.  Responsibilities include contacting members by email or phone to generate articles for the newsletter.  Also, find articles from other sources and obtain permission to republish them in our newsletter.

Board Member

Participate in our twice a year board meetings and help make decisions on the direction of the organization.  The SSSA president hosts a mid-winter board meeting on a Saturday in February/March.  Location is determined by the president.  The second board meeting each year is held on the Friday morning of the Annual Conference.  Attendance for both meetings may be in person or by phone. Throughout the year contact with the president is by phone or email.

Vice President

The Vice President must have been a board member at some point in time.  The Vice President is an officer of the organization and supports the president as needed with the intention to step-up as president.

Advisory Board Liaison

This person receives questions by email from our web site.  The liaison then passes the emails to our Advisory Board of professionals and follows up as needed to pass the responses back to the individual.

Toll Free Phone Support Person

This individual will answer our toll free phone line (888) 246-7772 and fields questions about our organization, our conference and Sotos syndrome in general.  No medical experience is necessary.  Every response or advice must be prefaced with a statement such as, "I can only tell you of my experience as a parent/sibling of an individual with Sotos syndrome."  One to six phone calls per month can be expected.

Public Awareness Chairperson

This chairperson will be in charge of completing our registration with the National Organizatio

Here is a sample of Frequently asked questions about the Sotos Syndrome Support Association's annual conference: