Molly K. - Quilt Finished in 2009

Born: August 20, 2004

Illness: Polymicrogyria, Epilepsy, CP, Vision Impairment, Dysphagia, G-tube, Hydrocephalus, Hypothyroid, Neurogenic Bladder, Obstructive Sleep Apnea

Molly K.'s Story

Written by Molly's mom LoRene in October 2008

Moira Dawn, aka Molly, was born on August 20, 2004 at 1:20 pm in Lincoln, NE.  She was a big suprise, 6 weeks early and only weighing 3 lb 13 oz!  She arrived via emergency c-section due to Mom's HELLP Syndrome and had some trouble breathing on her own, so she was transferred to a different hospital to a NICU.  Molly spent 4 weeks in the NICU learning to eat and growing.  Right off the bat, her neurological development was slow but her doctors assured us that it was just from the stress of Mom's illness and her early entry into the world.  She was evaluated by neurology after we thought we saw a seizure, but was cleared and diagnosed with reflux.

Shortly after going home, Molly started to have regular, rythmic spasms and a few months later (when a doctor FINALLY saw them) she was diagnosed with Infantile Spasms, a devastating form of severe epilepsy.  Over time her seizures got worse (up to 200 a day) and treatment options diminished.  We spent weeks in the hospital looking for answers.  Finally, our family moved to Chicago and we were lucky enough to find a wonderful pediatric neurologist who specialized in difficult to treat epilepsy.  Molly underwent months of testing and trialing various medications before her doctor proposed surgery.  So in May 2006, Molly's doctors performed a series of brain surgeries and actually removed the part of her brain causing the worst seizures.

Since Molly's brain surgeries that summer, she continues to have some seizures but her quality of life has improved greatly.  She is and will remain severly disabled with spastic quad cerebral palsy, a g-tube for feedings, developmental disabilities leaving her nonverbal and in a wheelchair, and respiratory issues.  But she is a beautiful little girl with a smile that can melt hearts.  She is our everything!