Lilllie Huff Toms River, NJ 7,095 Votes
This is Lillie, our beautiful 3 ½ year old little girl. She suffered a rare in utero stroke which caused massive brain damage. As a result, she has been diagnosed with Spastic Quadriplegia Cerebral Palsy, Cortical Vision Impairment, Respiratory Insufficiency, and Lennox Gastaut Syndrome. She continues to experience multiple seizures each day, which cause even more damage on a daily basis. In the short time Lillie has been with us, she has been hospitalized more than 25 times due to her many serious complications.
Developmentally speaking, Lillie is comparable to a 3-6 month-old child. She is non-mobile, non-verbal, and must be fed through a g-tube. She attends physical therapy 5 times/week, occupational therapy three times/week, and speech therapy 3 times/week. This year she even started school. While I won’t say it was ever easy to transport Lillie, when she was a baby, we could manage. But in spite of herself, Lillie continues to grow like any normal little girl. As she gets bigger and heavier, it has become more and more difficult to manage her into and out of her chair and the car. Without proper transportation, before long, we’ll be unable to get her to all of her necessary appointments.
Lillie has two amazing brothers who love her tremendously. Since her birth, I have had to devote so much time to taking care of her that I have been unable to work. My husband is an amazing man who works so so hard, but with just his modest salary supporting our family of 5, things have been tight. While it pains me to have to ask for help, we are determined to maximize Lillie’s quality of life, and we just don’t have the resources for the kind of transportation that Lillie requires.
I’ve learned much in the past 3 years about life and the people around me, but most of all, I’ve learned how much we all take for granted. But not Lillie. In spite of all of her hurdles, she shows such spirit, and fights hard every day to claim and keep her life. This baby is the most inspiring, strong-willed, person I have ever known. Through her, we’ve learned to celebrate even the tiniest progress and look forward to more. Because, with all of her setbacks, and there are plenty, Lillie keeps on smiling. She is truly my hero.