Willow D.

Condition: Rett Syndrome
City, State: Bend, OR
Club: High Lakes Elementary School Sparrow Club Service Hours:
Date Adopted: 2/01/2020

Willow's Story:

• Willow was a healthy baby and met all her growth and developmental milestones up until she was 15-18 months old. She had started to talk and walk by then but began to regress.

• Willow’s regression was both sudden and severe. She started losing interest in her toys, started fussing more than normal, and began putting her hands in her mouth constantly. Her parents initially thought it might be extreme teething pain.

• Willow’s parents spent a lot of time with doctors’ during that time, searching for answers. Many tests were done trying to figure out what was stealing Willow’s abilities.

• The test results came back on December 2, 2017. Willow was diagnosed with Rett Syndrome.

• Rett Syndrome is a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The typical sign of Rett syndrome is near constant repetitive hand movements.

• Because of Rett Syndrome, Willow is trapped inside a body that won’t respond, no matter how hard she tries. It’s like she has a really ‘bossy brain’. Sometimes it will tell her hands and arms to wave when she doesn’t want them to… or it just won’t let her voice come out.

• Willow now communicates with her ‘talker’, an Eye Gaze laptop device. She literally uses her eyes to tell her ‘talker’ what she wants to say. This has been a huge help to Willow, her family, and her therapists. They can now better help her with what she needs.

• Willow goes to physical therapy 3 times a week.

• Willow wears braces on her arms to help her better use her hands. She struggles falling asleep because her body fights against her and won’t relax. She needs assistance doing most everything, but she tries hard to do things on her own.

• Even though Willow faces challenges every day… she is a spunky, funny and smart little girl. She loves to be outside and enjoys reading and eating. She will try any type of food.

• Willow will be adopted as a Sparrow to High Lakes Elementary. Students will have the opportunity to work hard to raise money for Willow’s ongoing treatment through sponsored community service.