Layla: Age 4

Diagnosis: 548kb duplication at band 15q26.3

USA

Defying all Odds!LaylaSweet, beautiful, Layla Anne was born a little baby, soon to defy all odds. She arrived into a world where things were different for her. She is the only person in the world diagnosed with her condition. Layla has a 548kb duplication at band 15q26.3.  This duplication includes 4 genes, SYNMTTC23LLRC28 and MEF2A. Her doctors said that as an adult, she would be in a wheelchair for life, and that she would maybe be able to sign 10 signs for communication.LaylaShe fooled everyone thanks to the new, helpful ABM therapy, which her mother Nara is now trained in, bringing the new ABM therapy to Utah to help other children and adults.  Layla is walking with minimal help, standing by herself, has over a 300 word signing vocabulary, is saying a few words and sentences, is learning letter sounds, and is out to live life to its fullest at age four.LaylaHer favorite passions are riding therapy horses and camping! This has all been made possible thanks to the legislature helping her mother by passing, keeping, and building upon laws that make it possible for  parents of special needs children be able to go to school and help with some of the everyday expenses. On top of this gift, her mother is spending an additional $30,000 annually to help Layla have the highest quality of life possible.Layla

About the author

Gina

Gina began working tirelessly as an advocate for the rare and undiagnosed diseases community several years ago after her and her family moved to Utah. She is the Co-founder and Executive Director of the Rare and Undiagnosed Network (RUN), Chair of Utah Rare, and Utah Ambassador for National Organization on Rare Diseases (NORD).

Gina is currently undiagnosed and the mother of three children with an undiagnosed genetic dysfunction. She is advocating for clinical whole genome sequencing covered by insurance companies and hopes to help rare and undiagnosed families emotionally and financially.

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