The Bowen Lee Detamore Foundation

Welcome to The Bowen Lee Detamore Foundation Website!

WE HELP SUPPORT CHILDREN WITH DEVELOPMENTAL DELAYS AND DISABILITIES REACH THEIR HIGHEST POTENTIAL.

“Though she be but little, she is fierce.”

When Bowen was 15 months old, she suffered a massive seizure out of nowhere that eventually led to her diagnosis of a rare brain disorder called Hemimegalencephaly (it took me almost a year to get the pronunciation right). We then learned that one side of her brain developed abnormally and is larger than the other. This abnormality causes intractable epilepsy along with global developmental delay. Bowen is STRONG, fierce and determined. She proved doctor after doctor wrong and met her milestones time after time. She is one of the smartest 3 year olds we know.

That being said Hemimegalencephaly is a life long fight. One we are ready to tackle head on. And our path leads us in a different direction for her now. After failing two seizure medicines and having some discouraging test results, doctors at TCH have determined that surgery is the next step for her. In the next few months, she will have what is called a Hemispherectomy . This is one of the most intense surgeries a little girl could go through. They essentially have to disconnect the right side of her brain from the left. She will be in surgery all day and in the hospital for recovery for at least a month afterwards. She is unlikely to regain skills in her left hand (but again our Bowen loves to prove people wrong). She also will take a cut in her vision field which will require intensive therapy to adjust to this new normal.

We know now that life from now on will be “before surgery” and ”after surgery.” Just as her seizure changed our paths so will this.

UPDATE: Bowen had her hemispherectomy on 9/4 and continues to grow stronger and stronger each day in rehab at Texas Children’s. We owe so much to her surgeon, Dr. Sandi Lam, and the entire team here. We will continue to fight and raise awareness to the entire children with disabilities community. Thank you so much for all your support!