By Smarty Tina Hicks
I love meeting new people, especially when they have a story that inspires. Today I am happy to share the story of Brittnay Lynch and her amazing journey thus far as a super smarty mom. Brittnay’s aunt is my friend and a previously featured smarty mom, Sheri Lynch. If you listen to Bob & Sheri in the morning or via podcast, I’m sure you have heard Sheri talk about her niece’s daughter, Violet. Her silky blonde curls, beaming smile, eyes for miles and just the bestest most favorite baby all around. I asked Brittnay if she would share her story with our readers. Violet will be 3 in January, and Brittnay earned her “super mom” status early in her journey. Her story is a true story of motherhood and devotion. I hope you enjoy getting to know Brittney, learning about Angelman Syndrome and mark your calendar for Monday, November 4th 6:00 – 8:00PM at Legion Brewery SouthPark for A Vision for Violet.
My daughter, Violet, has a smile that radiates joy. It is absolutely infectious and she’s not afraid to flash it to anyone who comes her way. She is small, a toddler, but she has a gravity that pulls you in and keeps her at the center of your universe. She is my Everything, and a year and a half ago she was diagnosed with a rare neurogenetic condition known as Angelman Syndrome.
Angelman Syndrome is the specter that haunts my little family. It quite literally keeps us awake at night because poor sleep is a symptom. So are the atypical seizures that terrify us, and developmental delays that mean she’s still not walking, or even crawling, at almost three years old. It diminishes her motor planning and coordination. It steals her ability to speak and leaves her more vulnerable than I can let myself imagine. Angelman Syndrome snatched a lifetime of hopes and dreams from us, leaving us gutted and wracked with grief. I stumbled through life for months after Violet’s diagnosis. Some days I burned with rage at the injustice that a microscopic piece of my own DNA failed Violet so completely. Other days I cried until my eyes were too swollen to cry more.
I felt so strongly that I’d never be truly happy again; that the best I could hope for was the strength to endure. I knew that Violet needed me and that she deserved the best advocate possible. How I felt became irrelevant, so I threw myself into understanding my daughter’s diagnosis, and learning to navigate a disjointed and broken healthcare system. I was ruthless in my research, leaving no stone unturned, and that’s when I found FAST- The Foundation for Angelman Syndrome Therapeutics. When I read about the possible genetic therapies being funded by FAST, a light flickered in my soul for the first time in months. I was ready to connect with other families, and I found myself immersed in this absolutely incredible community of people. I joined groups of mothers who inspired me with the depth of their love and their drive to make the future brighter. I met these incredible women at the annual Science Summit and Gala last year. I heard the Chief Science Officer of FAST tell a ballroom full of Angelman Syndrome families that she’s so sure that a cure is coming that she restarted her daughter’s college fund. I felt every hair on my arms raise, and that light in my soul became a torch.
Violet kept the love alive inside of me through the darkness, and FAST and the Angelman community let the hope back into my heart. My daughter is my inspiration to work harder, love more, and dream bigger. I used to think that her diagnosis broke me, and in a way it did. But when I picked up the pieces I realized that the parts that were left were everything I’d ever wanted to be. In the midst of all that sadness and rage, I was changing into someone better than who I was. I became a person who loves ceaselessly, works through the pain, finds the silver lining, and has true love and joy in her life. I’m Violet’s Mom, and I feel blessed to hold that title every single day.
I also feel honored to be fundraising for FAST and giving back to the community that gave so much to us. Our family has partnered with Legion Brewing South Park to raise funds for the entire month of November. Starting on the 1st, Legion will donate $1 for every beer poured from their Adventure Tap through the end of the month. On Monday, November 4th our family will host a kickoff party from 6pm-8pm on the mezzanine level. This event is free to the public, and we’ll have complimentary appetizers and raffle prizes. Every dollar we raise will be donated to FAST at the annual gala in Chicago. We hope to see you soon! To learn more about Angelman Sydrome and FAST, visit www.cureangelman.org.
For more information on Fundraising for FAST A Vision for Violet:
When?
Monday, November 4th from 6-8p
Where?
Legion Brewery SouthPark
To donate, click here.
A special thanks to these generous donors and a peek into what you could win to support this amazing cause:
– A Vestique $50 Gift Certificate
– A New Town Dentristry Basket valued at $668.52
– Food Network Champion Pastry Chef Brittany Rayfield of CTO Sweets “Marshall Melting Snowman” “Melting Pumpkin” valued at $25 each
– One week of day camp at Camp KC
– A Clean Juice gift card (Quail Corners Location)
– Mary Madison Jewelry Necklace and earrings
– A Legion Brewery tour for 4
– A Legion Brewery private dinner for two with Chef Jean Briggs
