C: Colobomas- black spots on the eyes or clefts, vision issues and loss
H: Heart Defeat- Can be any type (Sophia has a bicuspid aortic valve), but many are complex, such as tetralogy of Fallot.
A: Atersia- The choanae are the passages that go from the back of the nose to the throat. They can be narrow (stenosis) or blocked (atresia).
R: Retardation of Growth- Growth hormone deficiency, short stature
G: Genital- kidney and urinary abnormalities, hydronophrosis and kidney reflux
E- Ears- Malformed cochlea defect; small or absent semicircular canals: CAUSE HEARING LOSS AND BALANCE PROBLEMS
vs.
S: Special- unique onto the world, a gift
O: Optimism- the courage to see the good and strive for more
O: Optimism- the courage to see the good and strive for more
P: Perfectly Proud- a shield of honor and pride, Proud to be ME
H: Healing Hearts and Hope- A Heart that gives and grows; Healing the mind, body and soul. Giver of Hope
I: Innocently Incredible- Words cannot describe the humble beauty that is YOU
A: Amazing- simply amazing
I often do not mentally associate Sophia with having CHARGE Syndrome. I am consciously aware that she has CHARGE and that CHARGE is the root cause of all of her health issues and growth delays. However, when I look at that baby girl, I simply see Sophia. A beautiful, one year old girl that possess the capability to change the world, defy the odds. A girl to love and grow and to grow in love. I hope the world will not look at her as a label but as the amazing girl she is today and will continue to become. I think the best thing I can do for her as her mother is to look beyond the label. To treat her like a "normal" child, not looking at CHARGE as a problem but as a part of her.
A: Amazing- simply amazing
I often do not mentally associate Sophia with having CHARGE Syndrome. I am consciously aware that she has CHARGE and that CHARGE is the root cause of all of her health issues and growth delays. However, when I look at that baby girl, I simply see Sophia. A beautiful, one year old girl that possess the capability to change the world, defy the odds. A girl to love and grow and to grow in love. I hope the world will not look at her as a label but as the amazing girl she is today and will continue to become. I think the best thing I can do for her as her mother is to look beyond the label. To treat her like a "normal" child, not looking at CHARGE as a problem but as a part of her.