Hope for Ellie

This page is for our beautiful daughter, Ellie. When Ellie was 5 weeks old, a large (and at the time, unknown) aneurysm hemorrhaged causing a prolonged stroke, seizure, and massive brain damage. Her right cerebral hemisphere was rendered inoperable, and the left half was also significantly wounded. She has subsequently undergone multiple brain surgeries, scores of ICU and hospital stays, dozens of powerful medicines, and hundreds of physical, occupational, speech, vision, and special education therapies. The functional loss of the right half of her brain has given her semi hemiparesis on the left half of her body. She also lost her ability to swallow (and as such, is fed through a g-tube), has had permanent cranial shunt placed due to Encephalopathy, and is blind due to cortical visual impairment, a condition where the brain is not able to interpret signals from the eyes. She's become intractably epileptic, and has had hundreds of seizures since the aneurysm, including numerous status seizures that last longer than an hour at a time. The right half of her brain has since been anatomically and functionally removed from her body through two Hemispherectomy surgeries at Children's Hospital. This was done to stop the seizures that originated from that hemisphere, though seizures have continued to come from her left (good) hemisphere.
The hemorrhage, stroke, and consequential seizures have greatly hindered Ellie's cognitive ability. Three years removed from the aneurysm, Ellie hasn't yet learned how to talk or communicate, to turn over and crawl, and, of course, eat. Developmentally, she hasn't been able to surpass a typical child's 6 month benchmarks, despite multiple, weekly therapy sessions and full-time nurse care. It's possible, given the continuance of her seizures and the severity of her cerebral damage, that she may never progress beyond where she is right now.
Despite all of this, Ellie has a generally happy disposition. Frequently, when she hears her sister's, Mom's, or Dad's voice, she smiles and often laughs. She loves to cuddle and be held, and she'll chew on and play with anything she can get her right hand on. She's seemingly unaware of all she's been through, and is simply happy to be alive. Ellie is the bravest person we know, and we love her so much.
The money given here will help pay for insurance premiums, and co-pays on surgeries, anti-seizure medication, orthopedic equipment, ambulance rides, ER stays, and ICU admittances. These expenses are ongoing.
If you can help, it is very appreciated. If you want to learn more about Ellie, feel free to join her facebook group, Praying for Ellie. If you want to see some videos of Ellie, you can view them at her youtube playlist.
We're so thankful for everyone (friends, family, doctors, nurses, therapists) who have helped Ellie (and us) survive. Ellie is an amazing little girl, and we're so grateful to have her in our lives.







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Organizer

Peter Lively 
Organizer
Westminster, CO
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