Tiny Light Emily

Meet nine year old, Emily, has the incredible ability to make people smile whether they are family members, friends, or complete strangers. This music-loving girl enjoys doing actions to songs like “Wheels on the Bus” and “Five Little Ducks” while someone sings to her. She also likes listening to music, cuddling, and story time.

When Emily was born, her mother noticed she was having trouble breathing. She soon coded and required intubation. After a month in the hospital, she was finally diagnosed with congenital central hypoventilation syndrome – a rare, neurological disorder in which the brain stem doesn’t tell her to breathe when she falls into a deep sleep. At this point, her parents were given the choice to “trach” her so she could use a ventilator when sleeping or to let her go. They consented to the tracheostomy (not really knowing what it was) and after three and a half months in the hospital, she was finally allowed to go home.

Unfortunately, Emily also faces some other challenges. She is visually impaired, unable to sit or walk due to low muscle tone, and is non-verbal, though she can make some sounds when she uses her speaking valve. She can communicate, to some extent, to those to know her by moving her tongue when she wants “more” of something or by faking sleep when there are new workers around trying to get her to do something. Emily is also tube-fed and has reflux, seizures, and global developmental delay. She is osteopenic (low bone mineral density), has scoliosis/kyphosis (a curved spine), and has a hip that dislocates several times a day.

It has been extremely difficult for her parents to watch their daughter be diagnosed with one disability or medical issue after another. However, they have done everything they possibly can to make sure Emily gets everything she needs. “Emily’s bright blue eyes, her smile, and the sound of her laughter make all the bad times and daily stress of her care worthwhile. She inspires us to give more of ourselves when we think we have nothing left to give.” Emily’s parents appreciate every moment they have with their daughter and hope that she will not suffer from too much pain as her condition worsens. “We will continue to cherish and will always be grateful for the time we’ve had (and have left) to spend with her. She’s taught us to love unconditionally, to treasure the little things in life, and to never take things for granted.”

Congenital Central Hypoventilation Syndrome

Story written by Emily Harrison

Images Captured by Sassy Photo

http://angebyers.wix.com/sasseyphotoz

Read More Stories From The Tiny Light Foundation

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This post originally appeared on our January/February 2013 Magazine