Deltona Lakes Elementary School’s Big Give

Save Gabrielle LaVerde

From Niemann-Pick Type C

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Oh What a Night!

This rare and deadly disease that attacks young children between the ages of 6—10 years of age.  There is no known cure for Niemann-Pick Type C, and once diagnosed, children die within a very short time.  Diagnosis of Niemann-Pick itself, in some cases, takes years, as was the case for little Gabrielle LaVerde.  Here is a list of certain key search words used when trying to identify this rare and deadly disease that attacks young children between the ages of 6—10 years of age.  Niemann-Pick Disorder, Niemann-Pick Disease, Niemann-Pick Type C, Neimann-Pick Disorder, Neimann-Pick Disease, Neimann-Pick Type C, NP-C, Gabrielle LaVerde,  Niemann-Pick is also known as childhood Alzheimer’s disease.  Gabrielle’s Gift, cholesterol, metabolism, genetic, metabolic, lipids, neurological, life expectancy,  speech, gait, developmental, delay, cerebral palsy, occupational therapy, behavioral, neurologist, pediatrician, geneticist, EEG, MRI, CT scan, seizure, medication, Orlando, Florida, Neuro Muscularist, Kennedy-Krieger, Johns Hopkins, Movement, Disorder, Neurology, Baltimore, Degenerative, Disease, Brandon, skin biopsy, stem cell, stem cell research, regenerative medicine, cytotherapy, amniotic stem cell, fatal, terminal, Ara Parseghian, Addi Hempel, Cassi Hempel, Dana’s Angel Research Trust, Jessica Leoni, Kevin Eadie, Jacob DeMeis-Dullea, Luke Liegghio, Race for Adam, Ty Quandt, Ashkenazi, Early Childhood Alzheimer’s, Fox 35 Orlando

 

 

 

Website & Youtube Videos donated by  http://www.GiseleVeilleux.com    Email Web Administrator

DLE’s Big Give

 

I never expected what was going to unfold on the evening of April 24th, 2008.  My goal was to deliver a heartfelt speech from the LaVerde family (provided below) to the Deltona Lakes Elementary School community, and then introduce a Thank You video that I designed for them.

 

However, once I arrived, I was informed that over 250 were attending this fund-raising spaghetti dinner.  Everything that DLE had done thus far had been spectacular, and I had a feeling that this night would be no different.

 

Before the “talent” portion of the evening commenced, Firefighters presented Gabrielle’s family with a $500 donation, and other businesses presented their donations as well.  What a great start, I thought to myself.

 

Mr. Housley was announced as, the Master of Ceremonies, and he started the show!

 

First, Clayton Cullaton played his guitar and sang “You Are Everything” and “How I Know”.  I think at that point, we were all pretty dumbfounded.  His voice carried far beyond the next building, and his choice of music made everyone sit at attention.  I could’ve listened to Clayton’s singing for hours!

 

Then, the Hispanic American Youth Group of Deltona danced.  I saw people stand up and clap, parents cheer, but still, even at this point, I believe we must have looked like deer starring into the headlights.  I do not believe we were prepared for what was yet to come.  It was as if someone needed to pinch us!

 

Then, Kristin McCollough appeared dancing to “So Long Deary”.  Well, my daughter jumped with joy as we watched Kristin executed her routine with class and precision. 

 

After Kristin stunned us with her talent, a little princess, Malave, sang “Su Nombre Es Cristo”.  What a living doll she was.  Cameras flashed throughout her performance.

 

What I never expected out of a community like Deltona was the performance by Jesse Hayes.  Jesse, from the Focus Dance Group, danced to “Moon River”.  I had just witnessed a jazz dancer, a Latin dance group that made the audience scream with pride, a precious singing angel, and now I was watching a real live ballerina.  Her performance was beyond description, but more importantly, the diversity of the evening was starting to hit me.  How could so many youngsters deliver such a diverse show of talent?  And they were not finished yet!

 

I hadn’t quite caught my breath after Jesse’s performance (neither had my daughter) when Tristan Leahy played a piano solo, “Minuet”.  He may have been one of the youngest performers, but his delivery was serious, and his performance wonderful.  It was obvious that this young man “Practiced!”.  Thumbs up to you Mr. Tristan! 

 

We were all still in a state of awe when the Hispanic American Youth Group of Deltona appeared again.  Geez, I hadn’t recovered from their last performance.  Could they do it again?  Yes, they could and they did!  “Wow!”   They were adorable, professional, and focused.  The crowd went nuts, but there were still more surprises in store.

 

Matthew Pallady appeared and played a piano solo called “Goblins Ride”.  Little Matthew delivered beyond anyone’s expectations, and his music choice was wonderful, for he played every note with creepy crawly enthusiasm!

 

Of course, after Matthew, there was more applause!  But were we prepared for the next performance?  No Way!

 

Mr. Housley warned us all that Erik Moore would bring the house down, and he did.  There was nothing left after Erik but rubble and dust.  People didn’t know whether to sit and watch or stand and scream!  Erik was more than just a hit.  His performance appealed to those of all ages.  He made me remember the days of tap dancing, when it was the next best thing to sliced bread, and I didn’t realize how much I miss tap dancing until I saw Erik perform.  He intertwined his routine with Michael Jackson’s Bad for an entirely different generation to appreciate, but it wasn’t just a copy cat of Jackson’s Bad.  No, not at all.  Tap dancing his way into our hearts, he burst out into a back flip, performed moon walking and spins that would make any ballet dancer cry, and more moves I can’t even describe.  By the time Erik was finished, all I could think about was New York and Broadway—Erik simply lives is the wrong town! 

 

I thought to myself, how can this talent show continue after a performance like that?  Yet continue it did.  Young Zachary Owen presented two piano solos, “Appaloosa Pony” and “Hoe Down”.   I thought to myself, I’ve seen it all now!

 

As the evening began to wind down, I watched two tiny little dancers, Ashleigh and Abigail gracefully flutter and prance on the stage, and I stood in amazement at the thought of the hidden talent that our city possess. 

 

After the two little angels left the stage, the Focus Dance Group returned, and performed their dance to the song “Fire”.  Once again, catching all of us off guard, and performing their hearts out.  There was no time for us to catch our collective breath between presentations -- just as the applause quieted from one, another began.

 

Last but not least, Ms. Shari Farmer commanded the stage and performed “Good Day”.  After just a few seconds of hearing the strength in her voice, watching her delivery, and feeling her enthusiasm, I remember thinking if only someone like Bette Midler could see what I’m seeing, Ms. Farmer would be packing her bags!  Shari finished the evening’s performance with “Since You’ve Been Gone”.  Her poise and confidence was that of an experienced professional, yet Shari is a recent Pine Ridge High School graduate.

 

It was clear that this school, and its community embraces individuality.   How else can you explain that in one night, under one roof, a crowd of cheering parents gathered together to celebrate their children’s talents and achievements, whether it was playing classical music on the piano, jazz dancing, ballet, hip hop, tap dancing, or sharing the God-given talent of singing.  It didn’t matter what mode of entertainment they chose, these kids were celebrated and appreciated by everyone there. 

 

After all the cheering and applause, it was my turn to get up on stage and deliver a heartfelt thank you to everyone from the LaVerde family.  I had a letter to read and a video to share that was going to create a different emotional atmosphere, one that we had managed to avoid up to that point.   It was important for us to identify the students of DLE as heroes, for what they had accomplished was miraculous.

 

I knew that what I was about to do would be difficult, and that my message would change the mood of the evening.   We had experienced a wonderful night of entertainment up until that point, but it was time for all of us to remember exactly why we were there and why everyone had worked so hard.  After all, it was a fundraiser, even though it felt like an  American Idol episode!  As I approached the stage, I heard a few groans from the crowd, and I knew that they knew precisely what they were in for!  I truly felt like a fly in the punch bowl! 

 
Just a few short moments into my speech, I noticed that not one person spoke, and everyone was listening to every word. 

 

As the video called "DLE’s Big Give" began to play on the large screen, not only were adults, and DLE students emotionally touched, but the performers were also moved by the show of gratitude from the LaVerde family.  When a spectacular photograph of an eagle in flight appeared along with large, dramatic letters reading “You Are Our Heroes”, the cheers heard from the students and performers was deafening.  That cheering was one of pride and appreciation for being validated.  In front of their parents, teachers, staff, these students were recognized and honored by the LaVerde family for their dedication and hard work to save their classmate—Gabrielle LaVerde.  I hope I never forget the sound of that cheer!

 

More communities need schools like DLE.  Schools that place an importance on kids, their amazing generosity, and their incredible talent.  The evening clearly showed me that this town needs more dance, more music, more art.   There are too many kind and gifted children in Deltona for us to ignore!

 

A tremendous thank you to all of the staff at DLE that created a spectacular evening!

 

Gisele

for the LaVerde family

 

04/24/08

To the DLE community:

For many weeks, we have been asking ourselves how we could ever find the right words to express our gratitude to all of you at DLE. How can we thank those that have volunteered, donated, offered kind and supportive words and prayers, and have held Gabrielle in their hearts?

It is impossible for us to truly thank each and every one of you for what you have done for us. You have all touched our hearts and honored us with your compassion.

Never in our lives could we have imagined that DLE would come together to do so many remarkable things. The show of support and encouragement from the staff, students, and parents at DLE has taught us about the power of hope.

All of this has happened because the students here are all heroes - they have been allowed to blossom, and follow their hearts. These kids do not know the meaning of the word "quit" and for them, giving up is not an option.

If this is a tiny glimpse of what these children are capable of, I wonder what they will accomplish in the future. What the parents and mentors of this school have done for these kids is incredible!

All of you deserve much more than a simple thank you from our family, but for now, with some help from Gisele, we offer you a tribute video, "DLE's Big Give: Home of the Eagles, and where Heroes are Made."

We hope this video shows you what your many gifts of kindness have meant to us.

With Love,

Joe & Danielle LaVerde

DLE’s Big Give!

Current Tally

DLE has raised over $10,500 for Gabrielle

 

These kids stopped at nothing, bake sales, donating their weekly allowance, delivering their piggy banks, a yard sale that involved the entire community, special dinners, more bake sales (this school has a sweet tooth), a talent show, and a memorable spaghetti dinner yielded quite a gift for Gabrielle's trust fund. The trust account is for her trip to receive experimental treatments in an attempt to save her life.

DLE’s Big !

 

Deltona Lakes Elementary School                 $10,500

Organizations that joined DLE and contributed to their Big Give include:

 

· Supra Telecom, Winter Park, FL

· Hispanic American Youth Group of Deltona, FL

· Bubba Gump Shrimp Co., Daytona Beach, FL

· Deltona Professional Fire Fighters, Deltona, FL

· IKEA of Orlando, FL

· Hairmasters of Orange City, FL

· Curves, Orange City, FL

· J.C. Lobster Pot, Deland, FL

· CiCi’s Pizza, Orange City, FL

· Deltona Happy Tails Groomer, Deltona, FL

· SAK Comedy Lab, Orlando, FL

· Jos. A Bank (Men Clothier) Longwood, FL

· Deltona Stetson Floral, Deltona Blvd, Deltona, FL

· Focus Dance Group of Sanford, FL

· Candlelight Catering, Deltona, FL 

DLE’s Big Give !

 

Deltona Lakes Elementary School                 $10,500

Organizations that joined DLE and contributed to their Big Give include:

 

· Supra Telecom, Winter Park, FL

· Hispanic American Youth Group of Deltona, FL

· Bubba Gump Shrimp Co., Daytona Beach, FL

· Deltona Professional Fire Fighters, Deltona, FL

· IKEA of Orlando, FL

· Hairmasters of Orange City, FL

· Curves, Orange City, FL

· J.C. Lobster Pot, Deland, FL

· CiCi’s Pizza, Orange City, FL

· Deltona Happy Tails Groomer, Deltona, FL

· SAK Comedy Lab, Orlando, FL

· Jos. A Bank (Men Clothier) Longwood, FL

· Deltona Stetson Floral, Deltona Blvd, Deltona, FL

· Focus Dance Group of Sanford, FL

· Candlelight Catering, Deltona, FL 

What do we Need?

 

The kids at DLE have shown us that a Big Give needs to be creative!  Some have donated their frequent flyer miles, hotel  points, you name it!  Anything to help Gabrielle get the treatment she needs.

 

We are hoping that we can find a Printing company to help us print flyers, a T-shirt company to make t-shirts for our supporters and volunteers to help spread the world, and a company that will make simple bumper stickers for our community. 

 

We also need more photos or video of the fund raising evening so we can include them in videos and on this webpage of that spectacular evening!  Please email GiseleVeilleux@earthlink.net if you have any photos you’d like to share.