Hi, my name is Lily. I am a 3-year-old girl who lives with my mom, dad and little brother. I had a pretty rough start. I spent the first few months in the NICU at Rainbow Babies and Children’s Hospital. I was hooked up to a bunch of different machines that helped me breathe, eat and watch for seizures. It seemed like forever in the hospital! Mom and dad couldn’t hold me for the first two weeks of my life. They also stayed with me every day in the hospital. They worked with an occupational therapist named Sheri who helped with my eating. I also did physical therapy, working on stretches and infant massage. In order for me to go home, I had to have surgery. I had to have a feeding tube placed in my stomach to make sure I was getting all the calories and nutrients I needed.

Not long after going home I started in-home therapy with Help Me Grow. They came once a week to help me work on drinking a bottle. I also had to go to Cleveland Clinic twice a week for occupational, physical, and speech therapy, which I still do today.

I had to have blood work drawn which showed I have a very rare genetic disorder called Coffin Siris Syndrome. There are only 200 cases known worldwide. It causes developmental delays and intellectual disabilities. It causes eating problems and inability to gain weight at the expected rate. The doctors always tell mom and dad that I am not on the growth charts. Which, in return, they say that I am on my own personal growth curve! It can cause low muscle tone and mobility issues. I did not start talking until after I was two. If you think of Coffin Siris Syndrome as a book with chapters … I am missing chapters. The syndrome also affected my vision to the point where I am legally blind. I do have glasses, but it is taking me awhile to get used to them because the prescription is so strong.

About two months ago I was tested for autism. The results showed that I am on the severe side of the autism spectrum. I am nonverbal and have sensory sensitivities. Despite a rough road up to this point, I love to laugh and smile. My mom and dad talked with my doctors and they thought I would benefit from having a service dog. It will help with my anxiety and frustration from not being able to communicate what I need and want. It can also help with my sensory sensitivity.

My therapies have helped a lot. My progress is slow but as we see it … I do everything in “Lily Time.” In occupational therapy I am working on eating and fine motor skills such as coloring and puzzles. In physical therapy I am working on going up and down steps and riding a tricycle. I have special braces to support my ankles when I walk. In speech therapy I am working on my communication skills. I just learned how to bring toys and snack to mom and dad to let them know I want this and I need help!

With my family and team of doctors behind me, I would like to have a companion beside me. Thank you work taking the time to get to know me. Thank you for any support you can provide. Love, Lily girl!

You can also mail a check or money order to:

W.A.G.S. 4 Kids

112 East Center Street

Berea, OH 44017

Please make a memo that your donation is for Lily