Hi, my name is Alaina. I am 9 years old and have been diagnosed with a rare condition.
Motto: Hope. Strength. Drive.
Champion Teammate: Madison Fuller
High School Team: Lake Travis Volleyball
When Alaina was 6 months in utero the doctors said they didn’t know what was wrong but that they couldn’t find her fingers in the ultrasound. Alaina was born at 36 weeks with a healthy heart and lungs and a calm demeanor, but with finger amputations, a club foot, anencephaly, and partial blindness. Her diagnosis's umbrella under Amniotic Band Syndrome.
She spent the better part of the first 7 years of her life in and out of hospitals as her list of diagnoses grew. In addition to her birth diagnoses she now has epilepsy, scoliosis, developmental delays/disabilities, a speech impediment, severe anxiety, and is not expected to mature beyond her mental age of around 5/6 in most areas.
There isn’t a day that goes by that we don’t wake up worried about if she made it through the night. Her epilepsy has the potential to take her away from us in one way or another but we are fortunate so far that she has been seizure free for 2.5 years! However, because of the structure of her brain, she will always have it.
Every day we learn something new about Alaina, and every day is a journey to understand her and what will happen next. We don’t know if she’ll ever be able to live on her own, but it’s important to us that she feels love and support and is surrounded by friends and family. She loves babies and helping the elderly, and her hobbies involve gymnastics, art, and anything girly!