 Sanfilippo mom and fierce advocate Brittany Lagarde will do and try anything it takes to keep her daughter (Sawyer) going - including eye-gaze technology that has opened her eyes (literally) to an exciting new communication ability - and incredible potential for children everywhere with neurodegenerative conditions.  In a recent conversation (on 6/21/24), I had the pleasure of speaking with Brittany Lagarde, a devoted Sanfilippo mom from Wisconsin (now living in Minnesota). She and her husband Sam have two kids - Sawyer (Sanfilippo type A) and Zion (an amazing little brother). Despite being non-verbal, Sawyer has made remarkable strides over the past couple months in 'speaking' to her family thanks to an innovative new eye-gaze communication device. Brittany shared her (still new) journey with this device, explaining how it works and the profound impact it has had on their daily lives. Essentially, this eye-gaze communication device tracks her daughter's eye movements, allowing her to select words, phrases, and even entire sentences on a screen. This breakthrough has given her daughter a voice, enabling her to express needs, emotions, and thoughts in a way that was previously unimaginable. The specific eye-gaze technology Brittany's daughter uses is the Tobii Dynavox EyeMobile Plus. This device combines a tablet with eye-tracking technology, allowing users to control the device with their eye movements. It is designed to be intuitive and user-friendly, making it accessible even for young children and those with limited mobility. For families affected by Sanfilippo Syndrome, tools like the Tobii Dynavox EyeMobile Plus offer a glimmer of hope and a tangible means to enhance communication and connection. For more information on this technology, visit the Tobii Dynavox website. We are very grateful to Brittany for sharing her experience and inspiring others in the Sanfilippo- and rare disease communities at large. To follow Brittany (@happylagardeless) on instagram, click here. Or search for @happylagardeless. To watch an adorable video of Sawyer 'speaking' to her parents using this innovative new eye-gaze technology, click here. Below you will find two video segments -- the first is a 4-minute clip of Brittany explaining the eye-gaze communication device and how it works. The second is the full (20-minute) conversation. Brittany explains the eye-gaze communication device (4 minutes long): Full interview (6/21/24) with Sanfilippo mom Brittany Lagarde (20 minutes long):
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Mike Dobbyn, Archives
June 2025
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