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A Thankful Thanksgiving 2021, Pt. 2

Lily & Shane

· Mission Accomplished,Autism,CoffinSiris Syndrome,Testimonial

Once upon a time, NEO Director of Training - Josh went to meet a then 3-year-old little girl named "Lily" and she's kept us smiling & giggling ever since. 

Lily has kept her parents on their toes from the start, her first few months spent in the NICU at Rainbow Babies and Children’s Hospital, where they helped her breathe, eat and watched for seizures. After tackling occupational therapy to help her eat, and physical therapy to working on stretches and infant massage, Lily still had to have surgery to place a feeding tube in her stomach in order for her to go home. The little warrior continues to go to Cleveland Clinic twice a week for occupational, physical, and speech therapy.

Not long after going home, Lily had blood work drawn which helped to diagnose her with a very rare genetic disorder called Coffin Siris Syndrome. There are only 200 cases known worldwide. It causes developmental delays and intellectual disabilities along with low muscle tone, mobility issues, eating problems and an inability to gain weight at the expected rate. The doctors always tell mom, Emily, and dad, Frank, that Lily is not on the growth charts. Which, in return, they say that "Lily is on her own personal growth curve!" 

Lily did not start talking until after two-years-old. Emily, paraphrases "If you think of Coffin Siris Syndrome as a book with chapters … she is missing chapters." The syndrome also affected her vision to the point where she is legally blind. While she does have glasses, it is taking her awhile to get used to them because the prescription is so strong.

About two months before we met Lily in 2019, she had been diagnosed with Autism Spectrum Disorder. She is nonverbal and has sensory sensitivities. Despite a rough road up to this point, she loves to laugh and smile. So why a service dog?