Lili's Story

As told by my dad

My name is Lillianne. I surprised my parents by being born three months early on June 17, 1997. I weighed just one pound, nine ounces and stayed in Evanston hospital for 22 weeks.

My parents thought that I was going to be the normal child they had always dreamed about. They thought I was going to perfect, a normal baby.

As days went by, I was finally able to go home three months after I was born. Mom and dad started comparing me to other kids. At one year of age, I could not even sit up. I was nine months old when Children's' Health Care Center in Waukegan told mom and dad that I was delayed in my physical development. Even though they were told in the past that I would need a lot of help, this news made them sad that the struggle to keep me healthy would be a long one.

Since then, I have received early intervention services where I had occupational, physical and speech therapies. I also attended PACT for physical therapy, occupational therapy and speech. My parents and I developed a close, caring relationship with my physical therapist, Christine that continued for several years.

Soon I learned to roll over, sit up, stand, walk with a walker and I am now working on walking with very minimal assistance and am hoping to transfer to walking with quad canes soon.

I have come a long way. I attend early childhood school and will be transferring to another school in the fall. I am happy around my 7-year-old sister Elli and 4-year-old brother, Edison. Both are helpful to my parents and me. My brother and sister are thinking of me. I love to play rough and I love roller coasters. I smile almost every day.

My parents are hoping that one-day I will be able to run and jump and that I will be independent, by not needing to get around with help from others. My parents say they have the same dreams for me as they have for my brother and sister.

View a letter from my sister.