In 2014 we are riding for 5 year old Lyla Alameida of Brownsville. Lyla was born with full Trisomy 18 – a chromosomal abnormality. Jenny and Joel, Lyla’s parents, were told she would not live more than a few months. Only 7% of babies born with T18 live to be a year old. Lyla has decided to break all the rules of T18! She began walking(very rare with this disorder) and now attends preschool. Lyla’s challenges are severe sleep apnea and low muscle tone. She is currently working on how to feed herself, potty training and verbally communicating her needs.
One of the main challenges of Lyla’s family of 5 (younger Sister Pearl and little brother Benjamin) is financial. This hard working middle class family does not qualify for any financial help. With the many medical doctors Lyla visits (ophthalmologist, audiologist, urologist, orthopedist, sleep specialist, etc.) her health care costs add up quickly.
Lyla loves to play in the water and swim! She enjoys music, animals and babies. She is a sweet girl with a happy, easy going personality. Her family says “they are blessed to have her in our very busy house hold…our prayers have been answered in many ways.”
Lyla’s wish is to visit the beach! It would be wonderful if we could send this hard working, deserving family to play and romp by the water. Lyla is very sensory oriented so she loves the feel of sand. If at all possible, we’d also like to provide her with an adaptive tricycle…sssshhh we are keeping that a secret!
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