Hi my name is Lunden! My sweet friends and family call me LuLu. I'm 3, almost 4 years old, and I am living with a rare brain malformation called lissencephaly. My brain is very abnormal (a limited edition you could say!) in the fact that it is small and smooth. My brain is missing the folds and grooves, called gyri, that typical brains have. This condition affects every aspect of my life-- developmentally and physically. Don't worry though! This doesn't hold me back from being the best I can be!
When my Mommy was pregnant with me, I was part of a perfect pair: identical twins. Sadly, joy was shadowed by sadness and fear when my identical twin (her name was Layne) passed away In Utero. I was born on July 6, 2010 at 3:30pm on the dot. While I looked ever so perfect, doctors said I had an abnormally small head. After an ultrasound and MRI, our fears were realized.
While perfect to Mommy and Daddy, I was seemingly flawed to the world. You see, when my sissy passed away, a blood clot from her body lodged itself somewhere in an artery we shared. That clot blocked the blood flow to my brain from 19.5 weeks gestation until my birth.
My parents heard things you never want to hear, especially about their own baby. They were silly things about me never walking, talking, or having this charming personality of mine… IF I made it home at all. When I was 24 hours old, I was moved upstairs and given a larger private room in the NICU of the hospital because we were told we would have a lot of arrangements to make. Mommy and Daddy had to forget what they were told about “kids like Lunden.” They said I deserved parents who gave me the benefit of the doubt. We didn't doubt the validity of information being shared with us, but we doubted the doctor's longterm prognosis for me. Every time I see a new doctor, they say that I'm not the kiddo they see in the MRI. I'm a true charmer and fighting against all the odds. Did I mention my killer smile?
When I was 8 months old, I forgot how to eat with my mouth and needed a G-tube to help me. Since then, I have had a lot of problems with my food coming back up and into my throat. When my food does that, my body has a hard time getting it back down to my stomach and all to often it ends up going into my lungs. When that happens, it makes it very hard for me to breath.
I was also born with epilepsy and have seizures, but Mommy and Daddy work really hard to keep those at bay with medications. I am also legally blind, but I don't let that get me down either!
In the last year, I started to have some hip pain too. When I went to the doctor, we learned that my hips were partially dislocated. I will require hip surgery but since I'm only 3, I am too young for the hip surgery to be successful. Mom and Dad were warned these things may surface, but we try to take it all in stride!
My daily life is greatly affected by my condition. I am dependent on Mom and Dad for all of my needs. They fought extra hard for me to get an appropriate education and to be treated with the respect and dignity I deserve. I go to physical therapy, occupational therapy, and have a teacher for the visually impaired. I work very hard at home and school so I can learn to communicate better. I am trying to master holding my head up and communicating with communicator buttons. I love babbling with my family and friends. I can even say hi, bye, and mamma.
I LOVE to swim! In the pool, I am FREEEEEEEE! I can move; and when I move, you can hear me giggling and giggling. My mom tells me that she thinks I was supposed to be a fishy, but I try and tell her that I'm not a fish… I'm Lunden!
I said all that to say this… my parents have put it all on the line for me. In August 2013, my mom took a leave of absence from her job and Daddy began to work 14-16 hours a day. They did this because the school district we lived in at the time was not willing to provide me with an appropriate education. From August 2013 until March 2014, Mom accompanied me to a private school 30 miles away. At school, she served as my nurse because she said I deserved to be educated.
During this period, Mom and Dad liquidated their savings account and eventually made the choice to rent our family home to another family to help pay for my private school for the visually impaired and an educational advocate. Mom and Dad have taken care of all my needs until this point, but they cannot figure out a way to help me get back out in the community.
Now that I am too long for my stroller, I require a wheelchair to get around--and my new wheelchair is VERY heavy. Our 10-year-old, 188,000 mile van is not handicap accessible and because of that, I don't get to go as many places.
I LOVE being out and about and I miss my friends and fun activities. But Mommy cannot get my wheelchair in and out of the van without another person to help her. So unless Daddy or someone can come with us, I usually miss out. Sadly, since my hips have begun to give me such trouble and I am too young for hip surgery to be successful, transferring me back and forth to a car seat is hard on my body.
I want to be out and about!!! I want to be back in my community with my family and my friends. I want to go to the park and to birthday parties. In order to do that, I need a handicap accessible van. A handicap accessible van can help me! It can help me get back to living life outside of my home. A van would allow me to get back to my social self and travel without having to be transferred from my chair to car seat and car seat back to my chair causing undo stress on my hips.
I shared all of that to ask that if you have the means to donate even a few dollars, you would consider doing so. If you would like to share my story with your friends, family, local businesses, or employers, please do. It takes a village...