Willow D.

Condition: Rett Syndrome
City, State: Bend, OR
Club: Miller Elementary School Sparrow Club Service Hours:
Date Adopted: 2/28/2022

Willow's Story:
Willow was a healthy baby and met all her growth and developmental milestones up until she was 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.

Because of Rett Syndrome, Willow is trapped inside a body that won’t respond, no matter how hard she tries.

Willow 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.

Willow has experienced seizures and will likely need surgery soon for a feeding tube and some sort of intervention on her feet/ankles as her muscle tightness has forced her to walk on her toes and not be able to use a flat foot anymore.

Willow is at risk for scoliosis, breathing abnormalities, epilepsy, digestive issues, sleep disturbances, anxiety, depression, and more. It’s hard for her to enjoy herself in the same ways that a typical six-year-old does, but she loves being outdoors whenever possible.

Despite all she faces… Willow tackles each day with a smile on her face and perseverance behind her eyes. She is resilient, strong, and full of grace, just as her name implies.

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


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