Lulu Needs a Ride!

For: Erin Jensen for Lunden Jensen
Organizer: Ann Butenas
of $42,000 goal
63% Complete
This fundraiser is closed. Thank you for your support!

The Story

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...

Fundraiser Updates

Posted on August 13, 2014 by Ann Butenas
It's Wednesday!  Let's make it a great day for ourselves but also make it a great day for others!  Please keep sharing this link to help Lunden and her family raise the funds they need to get her the fully-equipped, handicapped-accessible van she needs! Lunden really appreciates all of the generosity!  Thanks for helping me to help out a family I adore! :)

Posted on August 10, 2014 by Ann Butenas
Hey, everyone!  We are just shy of raising $25,000 for Lunden!  Let's keep pushing this thing so she can soon have that van she needs to get around!  She deserves this and so do her loving parents who have worked so hard to keep Lunden as healthy and as happy as possible!  We see so many horrible things on Facebook these days...let's do something POSITIVE and spread that energy around!  So, please keep sharing this link; make a donation if you can, and smile knowing that the positive energy you are putting out there in doing so will trump all that negative stuff currently going on!  Thank you so much!!!!!!!!

Posted on August 5, 2014 by Ann Butenas
I am encouraging all of my friends to share this link (again if you have already done so!) tonight before you go to bed and ask each of your friends to please contribute $1.00.  That's it!  $1.00!  I want to see little Lunden reach her goal. And if you are thinking there is something in it for me, well...there totally is!  I call dibs on riding shotgun with Lulu once she gets her new van! I have no shame reflex in admitting to that! :)  So...PLEASE SHARE THIS LINK and ask your friends to PLEASE donate just $1.00...or, at the very least, continue to share this link!  Thanks so much!  We are approaching our deadline!

Posted on August 2, 2014 by Ann Butenas
Happy Saturday!  The sun is shining!  The air is warm and breezy!  And little Lunden Jensen is so happy for all that you have done for her with respect to this fundraiser!  Let's keep it going as each day we are closer and closer to our goal!  She is so excited to get her new van so she can get out and see the world!  Who knows?  She just might pay you a visit some day!  You would be me!  So, please keep sharing!  I want to see this happen for such a beautiful little girl and her devoted parents!

Posted on July 31, 2014 by Ann Butenas
Hey, folks!  While we are making great strides in raising the funds little Lunden needs for her new van, we still have a ways to go yet!  Please continue to share this link with everyone you can! This little girl is an amazing fighter with a BIG personality!  You can't help but smile when you see her...and imagine the smile she will have on her face when she finally gets the van she needs so she can get around town with her parents!  Thank you so much!

Posted on July 27, 2014 by Ann Butenas
Lunden has been all smiles lately because everyone has been so generous in sharing this fundraiser and/or contributing to it!  She is an amazing little girl with so much to offer the world. However, she really wants to get out into the world more, so let's help her reach her goal of getting the funds she needs so her parents can purchase that fully-equipped, handicapped accessible van she needs! We can do this!  Let's roll!  Keep sharing this link! Thank you so much!

Posted on July 23, 2014 by Ann Butenas
We are just shy of $20,000 on this fund raiser!  Please share and help Lunden reach her goal!  While most of us take it for granted that we can hop in the car with our kids and run about town, Lunden and her parents face a challenge many of us cannot fathom.  Let's make sure that Lunden and her parents get this handicapped accessible van they need so that Lunden can enjoy each and every day like you do!  Let's roll!  Let's make this happen! I won't quit 'til I see Lunden riding shot gun! HA! :) Thanks to everyone who has helped us get this far!

Posted on July 19, 2014 by Ann Butenas
Happy Saturday!  Each day we are getting closer and closer to our goal of raising the necessary funds to purchase Lulu the van she needs so she can get around town and enjoy life!  Thanks to everyone who has helped with this cause and please continue to share the message!  Lulu is ready to roll and she wants to see you around town! I call shot gun! :)

Posted on July 15, 2014 by Ann Butenas
Continued thanks to everyone who is sharing this link and donating to Lunden's cause!  Every day, she is one step closer to being able to get the van she needs to be mobile!  Thanks so much!  Let's keep this fund raiser rolling!  Have a great Tuesday!

Posted on July 11, 2014 by Ann Butenas
Little Lunden will soon become a local celebrity!  The Kansas City Star is doing a feature about her and it should be in next Wednesday's edition in the 913 section!  We cannot wait! If you want Lulu's autograph, I am sure she will be happy to oblige!  She is just tickled pink that everyone has been so generous in their donations to her fund raiser and she is also thrilled with every single share this gets!  So, having said that, please keep spreading the word!  Every day we get one step closer to our goal of getting her the fully-equipped handicapped accesible van she needs!  THANK YOU!!!

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