Heart of a Volunteer
“The heart of a volunteer is never measured in size, but by the depth of the commitment to make a difference in the lives of others.” – DeAnn Hollis
Hello, my name is Diane West. I live in Clovis, CA. I retired from my position as a systems and statistical analyst for the Federal Government in 2013. I have a background in software development and data management relating to foundations for program development.
I have three daughters and seven grandchildren from ages 6 months to eighteen. Shelby, my oldest daughter, does graphic design for a credit union and Stefanie, my middle daughter, is a counselor for a local community college. Michelle, my youngest daughter moved with her husband to Texas from LA in January of 2016 so that my grandson could have brain surgery at Texas Children’s Hospital. As anyone reading this is familiar with, he was born with a rare tumor-like brain lesion called a hypothalamic hamartoma. I moved with them to Texas to help with things until after Dean’s surgery.
Our nightmare began on April 12, 2015 when Dean was 18 months. That was when he started having recognizable Complex Partial Multi-Focal Seizures and a “tick” that we didn’t realize was gelastic seizures.
The first neurologist they took Dean to was only trying to control his seizures by medication and had nothing else to offer. An MRI was scheduled to see if there were any injuries, etc., to generate the seizures. In the meantime, we scoured the internet for information since we had no familiarity with epilepsy. Michelle found a reference to gelastic seizures on an epilepsy support group page. After researching gelastic seizures, Michelle knew that was what Dean’s “tick” was. She called the neurologist to be sure that they were looking for a hypothalamic hamartoma on the MRI. The call came back that yes there was HH, but, “it was incidental and inoperable”, the only thing they could do was continue to adjust the medicine to help with seizures. After all our research, we already knew that medication was not the answer and that there were other options available. I was so angry at the ignorance evidenced by this doctor; she didn’t even bother to do a cursory look up on something she knew nothing about, before delivering her verdict.
Long story short, after several consultations, the decision was made to go with the MRI guided laser ablation procedure developed by Dr. Curry and Dr. Wilfong at Texas Children’s. Dean had his surgery on February 2016 and our sweet, bright boy, who had withdrawn to the point that I feared we were too late, was on the road to coming back within a day after surgery. We don’t know the future, there are some little things that are concerning, but overall Dean is doing wonderfully. He is almost caught up on the year he lost and is getting ready to start Kindergarten next year.
I volunteer with Hope for HH because their site was so helpful in the beginning of our research on this rare condition. It was hard to find current information and help relating to this rare condition. Many of the medical case histories that we found on hypothalamic hamartomas were outdated, worst case scenarios and terrifying. Hope for HH not only was a place of support, but they were constantly adding new information and reaching out to share with parents, patients and doctors that were uninformed about HH. I wanted to be a part of the knowledge sharing and the hope, so that others don’t have to be as terrified when they search for answers and they don’t have to search far.
Diane has been working as a volunteer for nearly two years as our Donor Database Manager. We wanted to formally introduce her to the entire Hope for HH community and thank her for continued efforts in helping the foundation in this critical role.
Interested in joining Our Team?
If you are interested in becoming a volunteer for Hope for HH, to get the process started we invite you to complete the following Volunteer Inquiry Survey to gather a bit more info about you and your interest.