I have lived in Spanish Fork since 2003. I married my husband Preston in 2012 and welcomed our oldest daughter Hannah to our family in 2013. We love the community here and the unique mix of the small town feel with everything you need nearby.
2020 was particularly eventful for our family. We adopted Noah and Gabe, whom we’d been fostering and learned around the same time that I would be expecting our second bio child. Going from a family of 3 to a family of 6 in less than a year was daunting but I trusted that this was God’s plan for our family and we welcomed a baby girl, Vivian, to our family in July.
As she grew I noticed little things. Vivian seemed to startle more easily than any other baby I’d ever seen. When she was eight months old, I noticed twitches that looked like the startle reflex beginning to clump together. I researched and stumbled onto a medical website that mentioned seizures that looked like the startle reflex. I immediately contacted Vivian’s pediatrician. He listened to my concerns and advised me to document as much as I could and assured me he would work on getting her in to see a specialist.
While waiting to see a neurologist, Vivian’s condition worsened and in June of 2021, she had a seizure that lasted 10 minutes. I called her doctor and told him that I was taking her to the hospital and asked if he had a recommendation on where to take her. He suggested Primary Children’s Hospital. She was admitted and I was given an official diagnosis after testing and imaging. Vivian has West Syndrome, a rare form of epilepsy, as well as NF1, a genetic condition that causes tumors to grow along nerves.
I was both relieved and devastated by the news. Yes, my mommy instincts were right however, my baby had been having seizures and suffering for MONTHS while I second guessed my intuition and waited. I realized that my little girl would likely never have the average life I had always imagined for her. West Syndrome and NF1 are known to cause developmental delays. West Syndrome is also likely to develop into other forms of epilepsy over time. I knew that Vivian’s best chance at having as much independence as possible was early intervention and using every resource I could. I got in touch with some wonderful local programs including Kids Who Count who provide occupational therapy, speech therapy, and other services to help her reach her full potential.
As I have walked down this difficult path with Vivian, my number one priority, aside from her health, has been her future independence. Even with medication helping to control them, Vivian still experiences multiple epileptic episodes a month.They are impossible to predict and very stressful for everyone in our household. I was looking for a solution that would give Vivian as much independence as possible as she grows with her disabilities, and something that would ease some of the burden they put on our entire family. I found a non-profit that trains service dogs to alert to seizures, provide comfort and safety to their handler during an emergency, and assist with mobility. I consulted with her medical team who agreed that Vivian would benefit greatly from having a service dog to assist her.
I am working with 4 Paws For Ability to acquire a professionally trained service dog that will be Vivian’s constant companion to help her become as independent as possible with her disabilities. We have agreed to fundraise $20,000 to do so. It costs between $40,000 – $60,000 to raise, house, train, certify, and place a service dog. If you are looking for a cause to donate to, I humbly ask that you consider donating towards Vivian’s service fee.
You can mail your donations directly
4 Paws for Ability
In Honor of Vivian Higgs
253 Dayton Ave.
Xenia, Ohio, 45385
You can also donate online at4pawsforability.org/dreams/vivian-higgs/ remember to put Vivian Higgs in the memo line so that it goes to her service fee.
