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Lulu Needs a Ride!

$20,642raised of $42,000 goal
49%

Organizer: Ann Butenas Beneficiary: Erin Jensen for Lunden Jensen

The goal of this fundraiser is to raise the necessary funds so that Lunden's loving parents, David and Erin Jensen, can purchase a handicapped-accessible van for her.

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Fundraiser Details

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...

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Updates

Updates

07/27/2014
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!
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07/23/2014
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!
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07/19/2014
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! :)
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07/15/2014
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!
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07/11/2014
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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07/07/2014
by Ann Butenas
WOW!  With everyone's help Lunden has raised over $10,000 so far!!!  She can only thank her friends and family who have helped spread the word about how deserving she is!  Please keep sharing!

Lunden is now FOUR years old?!??!  How does time fly by so quickly?  I know it's a cliche, but it seems like just yesterday she was born.  On her birthday she slept in until Noon and of course woke up with the biggest smile!  She went swimming with her Daddy and I.  Then, she had some of her closest friends over for some food and fun in the evening.  It's so heart warming to see all of the people that love Lunden.  One of her dearest friends said, "Lunden is kinda like family, but she's kinda like a friend.  That's just how best friends are!"  Could that get any sweeter?

Lunden also has some BIG news...
Those of you who know me know I'm not a pessimist. I like to believe that I'm a realist. To be real with you David and I have pulled a LOT of rabbits out of our hats. A $65,000+ rabbit in the way of an accessible van just wasn't one we could do alone. Last year Lunden was nominated to have a wish granted by Make a Wish. David and I said Lu would love an accessible swing set or a therapy room. On the other side of the room Elizabeth (my best friend since 2001), Natalie (Lu's main PT)  and my Mom took over and told the wish granters that those things would be amazing for Lunden, but Lunden wants to get back to living with the rest of the world. The three of them shared with Make a Wish how Lunden couldn't even take her wheelchair to school because her Mom couldn't get it in and out. How her parents were to thoughtful and knew there were others in need of big things too and would never ask Make a Wish for Lunden's ultimate wish, mobility. Months and months went by. After a few heartbreaks Make a Wish called last week!!! As many of you have noticed Lunden's fundraising goal has been lowered tremendously! That's because it's now been confirmed that Make a Wish will be granting Lunden's ultimate wish by converting a van (that we provide) with everything Lu needs to be mobile and greet the world again!!! This amazing organization has taken a large burden off of our shoulders. Now, Lunden need only provide a van of certian specifications.

CAN YOU BELIEVE IT!?!?! David and I are still shocked and were afraid to even whisper a word of this for fear of jinxing it. However, we've been assured several times this is happen for Lunden!

PLEASE continue to share Lunden's story! We can all do this for her! She's over 1/4th of the way to her goal so that she can provide a van to Make a Wish! As my friend Halley told me last week, "This will be the can that love bought!" So, lets let love win!!!
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07/06/2014
by Ann Butenas
Happy Birthday, Lunden!  You turned four years old today - double what the doctors thought when you were an infant!  You are strong, determined and ready to go the distance!  And you can go as far as you want to go with your awesome new handicapped-accesible van, which is why we are having this fund raiser for you!  Let's all wish Lunden a Happy Birthday and keep this link moving and if you can, make a $4.00 donation in her honor!  Thanks!
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07/02/2014
by Ann Butenas
Since agreeing to this funraiser David and I have been so humbled.  It was hard to do this.  It was hard to admit defeat. You try so hard as parents to give your kids everything.  We finally had to forgive ourselves in a way for not being able to do it all alone.  What I have found amazing is that with everyone's help Lu can get back out and about.  I knew Lunden had fans, but WOW!

It's been so hard for me as a Mom to leave Lunden at home more and more these last 6 months.  Since this kiddo was born she has gone everywhere with me.  She began coming with me to work when she was just 2 weeks old even.  If Lunden couldn't go I didn't go often times because I was so scared she would have something happen and I'd miss her last moments.  It's so morbid to type, but this was our lives.  We were told from the beginning that this girl was a miracle and I didn't want to miss a moment.

I've run out of words to say thank you, but please know we are so thankful.  The prospect of Lunden getting back out into the community she so loves is overwhelming!  We are so excited for her!  Please continue to share her story! <3
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07/01/2014
by Ann Butenas
Thanks to everyone who has shared, donated or both!  Lunden is so excited to get her new van so she can get out and see the world...something most of us take for granted!  Please continue with her on her journey by continuing to share this fund raiser and make a contribution if you can...any amount, no matter how small...takes Lunden one step further to the ride of her life!  Thank you!
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06/28/2014
by Ann Butenas
Thanks to everyone who has supported Lulu's cause, whether through sharing, praying, donating or all of the above.  It means so much to us and especially to Lulu's parents, David and Erin Jensen, who would do anything in the world for their little angel.  We still have quite a way to go before we reach our goal, so please continue sharing this so that others can support in any way they can!  Thanks so much!
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06/24/2014
by Ann Butenas
Thank you so much to everyone who is continuing to share Lunden's story!!!  We know this won't happen for her overnight and that's okay.  With hard work and a lot of love this will happen for her!

David and I have been working hard behind the scenes to help make this happen for Lunden, too.  Please don't think we agreed to this and walked away.  Without an accessible van Lu's world gets smaller and smaller everyday.  I (Erin) have been writing letters and sharing Lunden's story not only online, but with our local community.  Lunden has also been emailing The Ellen Show and Dr. Phill (why not?).  I've also made flyers and been applying for some orginazations who seem like a good fit for Lu.  The work to be done to support a child like Lunden never ends. 

Our friends, who we consider family, have been pitching in too!  Our friend, Jamie (who is in Colorado) is heading up a fun auction with my crafty and quilty friends on Instagram.  If you do not follow me on IG you might want to do that if you're interested.  I'll post the information as it's shared with me at erin_jensen and also #luluneedsaride.  David also has a great autographed Chiefs jersey he will be listing too!

It's funny because when Lunden was born David and I really saw who our real friends were.  So many people pitied us and talked behind our backs saying how sad it was to be given a kiddo like Lu.  That hurt. It hurt then and it still hurts now because Lunden is as amazing as any typical kiddo.  However, we are humbled EVERYDAY by the company we keep!  We know what true love is.  Now, after so much heartbreak we experience it everyday with our family, friends, this fundraiser and of course Lunden. 

Last night a dear friend of mine, Halley, sent me this link to her blog.  I was in ahhhhh.  I couldn't believe that she was talking about my family.  I'm sharing this link not to brag on my family and I, but to brag on our supporters.  How did we get so lucky???  If you'd like to read our story from the VERY beginning please do.  How she made my little family sound so wonderful is beyond me. <3  http://afterthedirtythirty.blogspot.com/2014/06/love-for-lulu.html

I know thank you may not mean much to some, but for us it's what we have to give.  So, thank you again for sharing Lunden's story.
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06/22/2014
by Ann Butenas
There isn't a day that goes by that David and I are not sweetly surprised by Lunden.  When she was born we were told that if she lived any period of time she would most likely be in a vegetative state.  We were told not to expect much from her.  Despite what we were told we push her. In her therapies, at school and at home we push her.  

Lunden has a particularly difficult time controling her mouth, lips and tongue due to not being fed orally. In Occupational Therapy (once a week) and at home (daily) we try to help Lunden become more aware of her body.  Today after so much hard work LUNDEN KISSED ME! I was cuddling with her and she puckered up and kissed me!  She made the kissing sound and everything! I cannot even describe how David and I feel!  The best part of it all was that there were witnesses.  I didn't dream it!

This may seem trivial to so many, but we know that LuLu's friends and family will cheer with us!  Lu will be 4 in just a few short weeks.  For 4 years her Daddy and I have loved her with all we have.  David and I have kissed her face, hands and toes more times than anyone could count and today she kissed back.

So, from our little lover to you "MUAH"!



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06/19/2014
by Ann Butenas
From the moment I found out David and I were pregnant I knew that Lunden and her sister were different.  I couldn't tell you why, but I knew.  The few people I told thought that I was crazy.  When Lunden's sister passed away I KNEW Lunden was going to be extra special.  

In May of 2010 David was in a car accident.  He was hit from behind while he was sitting at a stop light.  The other car was going 45 miles an hour, pushed David through the intersection and across 2 lanes of traffic where he ended up hitting a pole.  We knew his car was totaled.  When he immedietly started talking about replacing it with another car I told him that we couldn't.  I told him that I was sorry, but I knew this baby was going to need the funds a car would cost us each month.  I explained again to David that I felt in my heart that Lunden was going to have struggles.  

Later that same month our perinatologist told us that he thought Lunden had some sort of brain damage.  He couldn't be sure, but he said IF she made it to birth the chances were very high she would have some sort of deficate.  It's crazy, but this was music to my ears.  Not in a lets-skip-through-a-meadow-because-having-a-handicapped-child-was-going-to-be-awesome kind-of-way, but in an I'm-not-crazy-someone-else-feels/sees-what-I'm-feeling-too kind of way.

Fast forward a few months... Lunden was born.  I couldn't get enough of her and at the same time the sight of her made me weak.  I knew someone was going to rain on our parade soon.  I was right.  It was shortly after her birth that the MRI came back and the world stopped.  It stopped because I was a Mom before I even had a baby in my arms.  I knew she was extra special before the world knew.  I knew that we couldn't replace David's car.  WE KNEW that sharing a car was about to get a heck of a lot more complicated as the talk of her condition continued.  We were right.  

After about a year of Lunden and I taking David to work very early in the morning or him coming home on his lunch to get us so we could take him back to work before we went to her many appointments my parents gave us their van. That's the van we are still driving years later.  

That van helped us so much!  It needed work, but we didn't care. David did the work and cleaned her up for Lunden and I.  We named her Sylvia the Silver Fox.  No one really knows why, besides the fact she was silver.  Sylvia has been a work house.  She's taken Lu and I to more appointments at our local children's hospital, physical therapy clinic, occupational therapy appointments (I could go on and on) than we can even count now. That's the van we are still driving today.  Sadly, our van is now almost 11 years old, has 188,000 miles, is very tired and can no longer accomidate Lunden's needs.  That's why we agreed to this fundraiser.

One of our biggest fears when Lunden was born was that no one would love her except us.  Since her birth we have been proven wrong everyday and today was no different!  

Thank you so much to everyone that has donated so far!  If we could we would hug you all!  Please keep sharing Lunden's smile and story so she get can get back to living life! <3
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06/19/2014
by Ann Butenas
So....have you ever wondered what an Angel on Earth looks like?  Meet Lunden ("LuLu") Jensen!  She is positively beautiful!  She has the most loving and adoring parents who want to show her the world.  She came into this world with a host of physical struggles. She has her limtiations, but neither she nor her parents have any fear when it comes to setting out to defy those limitations.  Please help me help David, Erin and Lunden Jensen by donating to this fundraiser.  They are in need of a fully-equipped, handicapped accesible van so that Lunden can get out and explore the world. Let's make this happen!  Please share with others so we can get the word out and get the funds raised.  Remember...when one person gives, two people receive!
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