11/10/2021

Alexis has been having a great school year so far, says Jaime. She is starting to look at colleges, and went on her first tour in October! With her history of CVS episodes and passing out, we are trying to navigate the most realistic/optimal options for her. She wants to stay close to home to start, and is planning on touring more colleges in the Austin area over the Thanksgiving and Christmas breaks. It’s a very exciting, and nerve racking time for her, but we are so proud of the young woman she is turning into, and can’t wait to see what the future holds for her.

8/31/2021

Jaime, Alexis' mom, proudly shared that Alexis started her junior year of high school virtually, and is looking forward to being able to return to in-person learning later this year or next year! Her health is mostly stable right now. Her neurologist is following her for possible early signs of peripheral neuropathy.

Alexis and Mom.heic

7/21/2021

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Alexis was able to get her driving permit recently, and has been practicing driving with St. David’s Adaptive Driving program. "Although we still are not sure if Alexis will be get her license and drive independently, this has always been an unknown milestone for her. We are so glad she at least has the opportunity to explore driving even if she doesn’t end up using it in the long run." says Jaime, Alexis' Mom.

This summer Alexis also had the opportunity to participate in an internship program through Texas Workforce Vocational Rehabilitation Services. The internship was “work from home” and was a wonderful learning experience for Alexis as she begins to navigate what she wants to do after high school.

August 2018

Alexis was born with a visual impairment, and facial weakness. She was enrolled in a study at Boston Children’s Hospital when she was 3 months old. At the age of 7, she was diagnosed with CFEOM (Congenital  Fibrosis of the Extraocular Muscles), now defined as TUBB3 E410K syndrome.  There are less than 30 known cases in the world. Doctors are still learning a great deal about this genetic condition, but they have linked it to Cyclic Vomiting Syndrome (CVS), Kallman’s Syndrome, and Peripheral Neuropathy.

 

In the last 1 ½ years, Alexis has unfortunately developed the symptoms of Cyclic Vomiting Syndrome. Currently there is no cure, or even great treatment options for CVS, and Alexis often requires IV  fluids and meds when she has an episode.

 

Despite all Alexis has been through, she has the most positive attitude and is a kind and caring person. We remain hopeful for more information on this condition and better treatment options, or a cure in the future.