Tyler

Rebecca Woodbury / Family-Led Giving Campaign

Tyler lives with Skraban-Deardorff Syndrome (SKDEAS), an extremely rare genetic condition that causes global developmental delays, intellectual disabilities, epilepsy, and other challenges. 


Our family, together with other SKDEAS families, is participating in the SKDEAS Family-Led Giving Campaign to raise funds for research and support. Every dollar raised will help improve our understanding of this condition, develop resources for affected families, and create a brighter future for Tyler and the SKDEAS community. Please join me in supporting our SKDEAS Family-Led Giving Tuesday Campaign!


  • $622

    Raised

  • $500

    Goal

  • 13

    Supporters

  • 4

    Days Remaining

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About Tyler


Tyler was diagnosed with SKDEAS at around 9 months old. By the time he was 2 months old, I noticed that Tyler was different. He wasn’t smiling, cooing, or hitting any milestones. He slept a lot and, when awake, would stare at the wall, ceiling, or lights without making eye contact or responding to us.


We consulted a neurologist when he was about 6 months old. After a few tests, the neurologist immediately referred us to the emergency room for a brain ultrasound, followed by an MRI. These tests revealed brain anomalies, and we were advised to undergo genetic testing to understand the cause.


Since then, we have learned that Tyler also has epilepsy, low muscle tone, a submucous cleft palate, a heart defect, and other global delays. He does not walk, talk, feed himself, and still wears diapers.


Tyler has multiple therapies each week and is under the care of various specialists.


Life with Tyler is challenging but incredibly rewarding. He has made us stronger and better people. If I had to describe him in one word, it would be HAPPY!