Charles (Maine, USA)

Child's Name:   Charles

Birth Date:    July 21, 2009

Parents:     Wendy & Brian

Siblings:    Jonathan & Molly

Other Affected Family Members:    Unknown -- Charles was adopted by Wendy and Brian on 11-29-11.  Bio mom does not have any knowledge of family history.   Charlie lives with Wendy and Brian in their home, along with their other son, Jonathan, who is his biological half brother, who does not have MECP2 Duplication.

Reside:    Maine

Date Diagnosed:   August 30, 2010


*He rolled over at 4 months after he came to live with Wendy & Brian for the first time.

*He was always a very floppy baby and had a lot of reflux issues from birth.  He had a G-tube and a Nissen done in November 2010 at age 16 months and 16 pounds.  Today at 31 months he weighs in at 35 pounds.

*He left Wendy & Brian at 6 months old to try to reunify with his bio mom.  He suffered as aspirated pneumonia at 7 months old and came back to live with Wendy & Brian at 8 months old a very sick little boy.  They managed to keep him pneumonia free from 8 months to 22 months old, when he was admitted for just 2 nights with just a slight pneumonia and released just in time to go to Houston for the MECP2 conference in 2011.  He currently is being treated for bronchitis but so far no pneumonia.

*He sat independently at 24 months old and is slowly making gains every week.  He has 5 therapists who work with him weekly.  He is at 31 months almost ready to crawl, also able to weight bear for a few minutes on his feet in a standing position.

*He still eats pureed foods, thank goodness for the Baby Bullet, but is slowly working on soft vegetables.

Other Information:

*He is a very happy baby who loves music, baby first television, and watching his brother show him how to play with different toys.

*He loves to be talked to, he says randomly but not frequently dada, mama, haha, hey, baba, lala, and up.

*He loves his tub time.  His dad calls him whale in the tub because he kicks his feet and splashes water all over the person bathing him and the bathroom.