HOLLY PAAUWE

Specialty Director Hemimegalencephaly
Specialty Director Cortical Dysplasia
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Contact Information

Specialty Office
Indianapolis, Indiana

Phone
317-308-1746

Email
holly@hemifoundation.org

Specialty Disease Page
Hemimegalancephaly and Cortical Dysplasia
  Holly is an Indiana native who grew up in the Ohio River town of Tell City. She received her BS degrees in Environmental Chemistry and Geology from Indiana State University. Holly went on to graduate school at the University of Florida (GO GATORS!) and would meet her husband Jon, also a geologist, there. Following the birth of their first child in 2001 - a son named Caiden - they moved to Indianapolis, where they still reside today. Holly began her professional career with the Indiana Dept. of Environmental Management, where she worked until her daughter was born. With Avery’s birth in 2005, everything changed. Avery was diagnosed with Left Hemimegalencephaly (HME) within 24 hours of her birth. The condition caused an intractable seizure disorder, vision impairments and global developmental delays and currently requires her to be tube fed. Avery has undergone three (3) brain surgeries (left functional hemispherotomy, subtotal left anatomical hemispherectomy, and additional resection of the remaining left occipital lobe) in an attempt to "cure" her seizures. In spite of this, Avery continues to have daily seizures, though they are fewer and less severe.

  Following Avery’s diagnosis, Holly began researching everything she could about HME. While there was information to be found on the web, most of it was medical in nature and "older" and "grim". Her biggest source of hope and support came from those few families she found online through an old (and since defunct) Australian support group and through individual webpages and blogs dedicated to various children with HME. She also found comfort in a Yahoo group for HME that would come to be very active and a great support. As time went on and Holly met other parents through the webpage and blog she had created for Avery, she realized a real need for a central, all-encompassing, web-based place of hope, support and information for families affected by HME and the related Cortical Dysplasia (CD). As a result, in early 2008, Holly created a web site known as The Hemimegalencephaly Family Support Network that is intended to meet those goals once completed. She is actively collaborating with other families of HME and CD to get content for the site, using their collective knowledge and experience to help other HME and CD families whose journey has just begun.

  Inspired by her daughter, Holly has since found a new career - helping parents of children with special needs advocate for their children and find the resources and supports they need to raise their quality of life as a whole family. Holly works part-time as a parent liaison for About Special Kids (ASK) - Indiana’s parent-to-parent organization for families of children with special needs. In this position, she works specifically with families whose children are in the State’s early intervention (EI) program, helping them connect with appropriate community resources, find local support groups, understand special education law, navigate healthcare finance options, and become effective advocates for their child(ren). She also partners with other professionals to bring better services to families and to educate them on what families in early intervention need for their kids and for their families as a whole.

  Holly met Cris, Kristi and Jesse Hall during Avery’s last surgery in early 2008. When the Hall’s later established the Foundation, Holly was excited to know that there would now be a place for ALL families dealing with this radical surgery to find support, hope and encouragement. And when she was later asked to be a part of the Foundation team, representing and assisting families of HME and CD, she was honored to accept. At The Hemispherectomy Foundation, Holly will use her knowledge of HME and CD to support other families of children with these diagnoses. She is passionate about helping other families on this journey get the information they need to effectively advocate and care for their child(ren). The knowledge she has gained in her role at ASK will also serve Foundation families well in regards to resource identification and location. Holly also enjoys event planning, decorating, creating and reading... in all her spare time!
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