My name is Daisy Ann and I was born with Spina Bifida. I have a myelomeningocele and a Chiari II malformation that affect the mobility of my lower extremities, my bladder function, and my breathing and swallowing abilities. While Spina Bifida is a common disability, the way it presents for me is extremely rare. Spina Bifida is a snowflake condition and every child with it is unique. Some children with Spina Bifida don’t look like they have a disability at all, while others use braces and wheelchairs to help them move. A small percentage of kids end up needing a tracheostomy, or “trach”, to help them breathe. The tracheostomy tube is surgically inserted through the neck to bypass the airway – it becomes a new airway that is safer. It also allows children like me to use a ventilator, which helps them to take breaths when their brain might forget to tell them to do so. I also use a feeding tube to eat all my meals, which is common for anyone with a trach. My food goes straight into my belly so there is no risk of me choking on it.
I was in the hospital for 3 months when I was born, and at just 2 1/2 years old I already had six surgeries and many, many hospitalizations. Spina Bifida is my disability, but I have many other secondary diagnoses and medical complexities that affect my day to day life and my care needs. Even though I have dealt with more than most children could bear, I am the happiest girl around! I work hard every day doing physical, occupational, speech, and music therapy. I love playing with other kids, especially my older brothers, and I’m happiest when I learn new things by watching others. I can communicate through sign language and by using a speech device; I have so much to say.
My size is small compared to other kids my age and I can’t verbalize, but don’t let that fool you – I am your typical two year old who loves attention and doesn’t like being told no! Some of my favorite things to do are arts and crafts, building with play-doh, and going outside to go on walks and explore nature. I don’t know how long I will get to enjoy life on earth, but I know my life already holds such great impact. There are daisies on my page because that’s my name! Daisies represent new beginnings by the way they close their petals at night and open again in the morning. The name “Ann” means God’s grace. We believe God’s grace is all over my life and that He is using me to create new beginnings in the hearts and souls of those I encounter.
Perfect Through and Through 