To say last week was a bit stressful and hectic would be an understatement. In a way, our world was turned a bit upside down with Bex’s diagnosis of Infantile Spasms. One of the main reasons we felt so helpless at first was because we didn’t know what we were up against. Even though IS/West’s Syndrome was discovered back in the 1840’s it’s still a relatively unfamiliar disorder…it only affects roughly 1 in 3,000 kids.
Even though we are still roughly “new” to IS, Lindsey and I feel we can serve a purpose with spreading awareness. We are hitting the books, looking up articles online, enlisting friends/family in research, and reaching out to medical experts to gain a better understanding of this serious disorder. One of the websites that has been helpful is The Child Neurology Foundation website on Infantile Spasms Awareness. There is a great video that explains Infantile Spasms (see link below) and I ask that you please take the time to watch it (about 25 min long). I have also posted this video on the “About West Syndrome” page, along with other informative videos.
I believe we have been given an opportunity to be advocates for children and families suffering from IS. To put it in perspective, when the neurologist confirmed Bex had IS, I felt a wave of emotions – sadness, anger, & fear…all at the same time. The biggest kick to the gut was the fear…not knowing how to help my baby girl. I would never want another parent to feel that way. Ever.
We have a lot of friends and family members who are new parents or on their way to becoming parents. My intent isn’t to scare them with our message. They shouldn’t necessarily have to worry themselves over the possibility of their child being diagnosed with infantile spasms. The odds are 99.97% of kids won’t be affected by IS…but what about the 0.03% that will be?
Emerson said, “Knowledge is the antidote to fear.” Truer words were never spoken. Hopefully Bex’s journey will spread awareness and help new parents gain knowledge so they can 1) understand and identify symptoms of IS accurately and quickly, 2) receive treatment ASAP and reduce the chance of more damage, 3) develop a game plan for addressing any type of developmental delays and improve their child’s quality of life, and most importantly 4) be FEARLESS when taking on IS…like my little girl.