We are so grateful to Christine, mother to young Tala, for sharing her family’s journey—
Tell us about Tala!
“Tala is a 2.5-year-old young girl, full of joy! Tala knows exactly what she likes and dislikes. She enjoys being part of the day-to-day activities of life, but ultimately loves the chaos, drama, and excitement of events. Tala is not able to communicate through words but is able to inform everyone through her sounds, expressive eyebrows, and infectious smile. Tala likes warm weather, but not too warm. She likes laughter, loud noises, and her chest percussion therapy. Tala loves to play with her switch plate and various attachment toys. Tala loves bright lights and thinks the light board is absolutely amazing. She seems to like adding and popping the bubbles as she plays.
Tala is diagnosed with Walker-Warburg Syndrome— a severe congenital muscular dystrophy that affects the eyes, brain, and muscles. Because of this overarching diagnosis, Tala has diagnoses specific to each part it affects. Tala has bilateral microphthalmia and is completely blind in her right eye as it did not develop properly due to her WWS. Tala has some light vision in her left eye, but the full scope of sight is unknown. Tala wears glasses that tint with light to protect whatever vision she does have.”
How has her vision impairment impacted the family?
“As Tala’s mama, I did not have any indication that Tala had any visual impairments prior to birth. The day after Tala’s arrival, she received her diagnosis of bilateral microphthalmia. I was distraught at first because I have an older daughter who has no visual impairments and is neurotypical. However, I vowed that day that I would do anything and everything to ensure Tala would succeed in whatever she wanted to and could do, and that I would learn to accommodate any need. With the help of personal research, study, and David from VIPS, we have learned an exponential amount of knowledge that has made us better people, parents, and community members. The biggest challenge for us was finding ways to produce and enhance smiles and laughter. Without vision, I struggled as a mama to entice expressions and smiles from Tala. The feedback, persistence, and continued attempts made this challenge possible. And once we as a family learned ways to interact without vision, but through voice, touch, smell, and constant communication in all senses, we had breakthroughs.”
How has VIPS played a role in Tala’s journey?
“VIPS has played a vital role in Tala, and our family’s journey! David [with VIPS], came into our home with a knowledge base for parents, siblings, and Tala as an individual with visual impairments. He has provided tips, tricks, and recommendations based on Tala’s needs. Tala struggled with days and nights. A stuffed animal with a certain scent was given. Tala sleeps with her lamb, smelling like vanilla and sweet pea, every night. No matter where we go, it goes with us, and she knows, by the stuffy and the smell, that it is nighttime. Tala’s understanding of play has improved vastly since beginning services with VIPS. Tala was not able to play independently until a switch plate was introduced to us. Once Tala played, with time and multiple attempts, Tala now understands “cause/effect” which is such an amazing milestone and accomplishment.”
What do you wish people understood about Tala and your journey so far being her mama? Any advice for other parents?
“My goal is to share Tala’s journey, our family’s journey, to provide hope where hope has been lost. When receiving life-altering diagnoses, hope can seem to be fleeting. For our family, receiving Tala’s diagnosis of Walker-Warburg Syndrome was life-altering, hopeless, and heart-shattering. Because her diagnosis is terminal, unknown, and with no cure, finding hope and maintaining that hope is vital. Tala is an amazing, vibrant, joyful child. This journey of bridging the world together through knowledge, understanding, adaptations, research, play, and hope, is the greatest opportunity we have been able to be a part of. My advice to anyone is to never stop learning, never stop hoping, never stop loving, and know without a doubt that doctors and diagnosis know much, but they don’t know everything. Children, siblings, and parents are resilient. You are resilient!”
Feel free to keep up with Tala’s journey through the family’s Facebook Page “Tala Beth Warrior Princess”.
Tala’s family has also started a Nonprofit, Little Warrior Wishes, inspired by their girls, Tala and KaiLayna. Little Warrior Wishes, Inc. (LWW) is a wish-granting organization established to assist families in creating lasting memories when timeframes are limited. LWW is a nonprofit organization that serves children 0-5 with life limiting diagnoses in the Daviess, Knox, Martin, Pike, and Greene County in Indiana, as well as any child in the United States with Walker-Warburg Syndrome. Visit: littlewarriorwishes.godaddysites.com