Gabrielle LaVerde Fighting Niemann-Pick Type C

Almost Four Years Ago

2011-09-19T08:03:00.001-07:00

This was the first video published for Gabi, February 12th, 2008. Hard to believe it will be four years soon. We have not updated anyone, because there is no good news to report. Gabi's health is declining. We appreciate all of the support and prayers.

One Year Later, by Danielle LaVerde

2008-12-11T09:53:00.000-08:00

One Year Later …

Today marks the one year anniversary of the diagnosis that nearly destroyed me. I remember that day so clearly. I was absolutely distraught. I remember not being able to breathe. I felt as though I was suffocating. I remember how badly my heart hurt and how heavy it felt. I remember feeling very empty and alone. And I remember wanting to die. The reality of Niemann-Pick Type C hit me like a ton of bricks, knocking the wind right out of me.

Even though the diagnostic process was exhausting, I always felt that we would eventually find the answer and there would be a magic pill that would make her better. I just knew that God would not allow the anguish to continue. So when the diagnosis was confirmed, I was so angry.

I spent months asking “why”. Why my child? Why a disease so devastating? Why were we being punished? I thought no one could understand my pain. It was completely overwhelming. I received a death sentence for the most important thing in my world - - my precious daughter. I had worked so hard and waited so long for her. And now I was going to lose her before she even had a chance to live. Every time I looked at her I felt anger and pain.

Gabrielle’s school, Deltona Lakes Elementary,

I began to look at Gabrielle and think, “I am so blessed to have this special child. Of all the women in the world, I was chosen to be her mother. God knew I would fight for her.”

Those who have helped us carry the weight of this pain have created

While her future is still uncertain, we now have hope. She is everything to me and I will never stop fighting for her. Gabrielle was a miracle once before, and thanks to the strength and support of her Guardian Angels, she has a chance to be a miracle again.

“When we cannot trace God’s hand, we must simply trust His heart."
~ Charles Spurgeon

Save Gabi

2008-10-12T11:05:00.000-07:00

Central Florida Prepares Big Give to Save Dying Child

2008-05-20T12:28:00.000-07:00

Central Florida Prepares Big Give to Save Dying Child

DELTONA, FL/May 15, 2008 Immediate Release/ Contact: Lloyd Marcus 954-934-9588
After a local elementary school raised over $10,500 in just a few months for their classmate, Central Florida is preparing to join them in the fight to save a 6 year old student, Gabrielle LaVerde. Tucked away, in-between Daytona Beach and Orlando, an elementary school, called Deltona Lakes Elementary, which consists of 1,005 students, worked non-stop in raising awareness and collecting donations for their fellow classmate. Their fund raising ideas were creative, yet simple, and were referred to as DLE’s Big Give.

DLE’s Big Give all started with the students standing in line at the front office every morning with their piggy banks, weekly allowances, and coin jars. Once the students had raised several thousand dollars, the students solicited the help of their parents and neighbors. What followed was bake sales, talent shows, a community yard sale, and a spaghetti dinner that had profound results.

The news of the elementary school’s Big Give and this rare and fatal disease got the attention of Fox 35 News. The interview was aired May 10, 2008:
http://www.myfoxorlando.com/myfox/pages/Home/Detail?contentId=6512151&version=2&locale=EN-US&layoutCode=TSTY&pageId=1.1.1

Gabrielle LaVerde, a 1st grader, who attends DLE, has been diagnosed with a rare and fatal disease called Niemann-Pick Type C (Early Childhood Alzheimer's). Life expectancy after diagnosis is 6-10 years. Only 300 Americans have been diagnosed with this disease. Only 500 cases are known worldwide. Niemann-Pick Type C is a genetic metabolic disease that causes multiple neurological disorders.

Gabrielle's treatments run $9,000 per month. Her parents are planning to take her to Mexico for an experimental treatment. The treatment cost $19,000. Airfare, accommodations, car rental, food, and incidentals will cost approximately $5,000.
Friends of Gabrielle have asked Lloyd Marcus to help take the Big Give to the next level. Mr. Marcus is challenging Central Florida to come together as a family and rally around the LaVerde family and their adorable little girl. “Do your own creative Big Give for Gabrielle. Let's work together to SAVE GABRIELLE LAVERDE,” he said.

Please raise funds throughout the summer. Before school begins, the LaVerde family will be presented with a check from “Central Floridians for Gabrielle” at a press conference. Location and date TBA. Press conference will include recognition of major contributors, music, and celebration festivities.

National and Corporate Contributors are welcome to join this community effort.
Please mark your contribution: “Central Floridians for Gabrielle.” Contribute to GABRIELLE'S TRUST ACCOUNT By paypal on Gabrielle’s Website or directly to Sun Trust Bank Attn: Jessica for Gabrielle LaVerde / 2602 Enterprise Road / Orange City, FL 32763 or 1-800-786-8787 or 386-775-8878. To Learn More about Gabrielle visit at: http://www.GabrielleLaVerde.com or email GabrielleLaVerde@earthlink.net
FOR INTERVIEW or contact information, contact Family Spokesperson:
Gisele Veilleux 407-256-5960 or gisele.thedogliberator@gmail.com
###

A Prayer for Gabrielle

2008-05-14T10:31:00.000-07:00

A Prayer For Gabrielle

Oh Angels of the Lord

Watch over this child tonight

Keep her safe from harm

Till the World puts this to right

Gabrielle's story, a thousand hearts touched

Angels whisper to her, the World cares so much

Bring beauty to her dreams

Your hands on her silken hair

Let her wake tomorrow

People are rushing there

Softly, gently let her lay

Wings of Angels stay

Teach us through this child’s eyes

To bring the promised way

Amen

With all our Love to you

from Carol and Robert, New Mexico

Mother of Niemann-Pick Type A writes to me

2008-05-14T10:23:00.000-07:00

This parent, after seeing Gabrielle on Fox 35, sent me the following email. Her daughter lost her fight against Niemann-Pick Type A.

"I hope that you recieve this email. I saw the news last night and it was the biggest shock to me when I heard the disease niemann pick. Just last year I had a daughter pass away with niemann pick disease type A. I completley understand what you are going through and I feel so terrible to see others go through this, and I just wanted to let you know that I am here for you for support. If you ever need anyone to talk to that has experience this to. So you can email me anytime as support to you. She is a beatufil little girl.

Ashley"

Press Release, Deltona, Florida - May 9, 2008

2008-05-09T07:34:00.000-07:00

Central Florida Unites to Save Dying Child
DELTONA, FL/May 9, 2008 Immediate Release/ Contact: Lloyd Marcus 954-934-9588

It all began with 10 year old Ryan Bowling. His mom is extremely dedicated to rescuing animals. One day when she picked Ryan up from school, he asked her an important question. “Mom, isn't saving the life of a kid more important than saving the life of a dog?” Ryan's question caught Gisele, his mom, off guard, but she replied, “Of course!”

Ryan told her about Gabrielle LaVerde, a 1st grader who attends his school. Gabrielle has been diagnosed with a rare fatal disease called Niemann-Pick Type C (Early Childhood Alzheimer's). Life expectancy after diagnosis is 6-10 years. Only 300 Americans have been diagnosed with this disease. Only 500 cases are known world wide. Niemann-Pick Type C is a genetic metabolic disease and causes multiple neurological disorders. Ryan ordered his mom to “Get to work!”

Gabrielle's treatments run $9,000 per month. Her parent's are planning to take her to Mexico for an experimental treatment. The treatment cost $19,000. Airfare, accommodations, car rental, food and incidentals will cost approximately $5,000.

Fund raising for Gabrielle began with her schoolmates at Deltona Lakes Elementary School, Deltona, Florida. Through a talent show, spaghetti dinner and numerous other fund raisers, DLE raised $10,500.

Friends of Gabrielle have asked me to help take the fund raising to the next level. I'm challenging Central Florida to come together as a family and rally around the LaVerde family and their adorable little girl. Do your own creative fund raiser for Gabrielle. Let's work together to SAVE GABRIELLE LAVERDE.

Please raise funds throughout the summer. Before school begins, the LaVerde family will be presented with a check from “Central Floridians for Gabrielle” at a press conference. Location & date TBA. Press conference will include recognition of major contributors, music and celebration festivities.

Please mark your contribution: “Central Floridians for Gabrielle.”Contribute to GABRIELLE'S TRUST ACCOUNT
By paypal on Gabrielle’s Website or directly to Sun Trust BankAttn: Jessica for Gabrielle LaVerde / 2602 Enterprise Road / Orange City, FL 32763
1-800-786-8787 or 386-775-8878
To Learn More about Gabrielle visit at: http://www.gabriellelaverde.com/ or email GabrielleLaVerde@earthlink.net
FOR INTERVIEW Contact Family Spokesperson: Gisele Veilleux 386-532-5237
http://www.lloydmarcus.net/

A Poem of Hope for Gabrielle

2008-05-06T10:20:00.000-07:00

HOPE

Hope comes in many colors, many reasons

It can come as a tiny spark of light in darkness

It can come softly as the falling rain

It can come when we are not even aware

Hope is a necessity of life for each of us

It is what we hold onto when the rope breaks

It is the cry of a sick child on a dark night

It is a mother's prayer for her family

Hope can be fragile or strong and unmoving

It can be as a raging stream or a gentle lake

It can float on the delicate wings of a butterfly

It can lodge within a heart and warm the soul

Hope, it is what keeps us going, keeps us believing

Life would not be bearable without it

It is the look of trust in a child's eyes

Hope, is the heart of us all.

For Gabrielle, keeping hope alive.

Addi and Cassi on ABC's Good Morning America

2008-05-02T12:30:00.000-07:00

Watch this spectacular coverage on two young twins who suffer from Niemann-Pick Type C.

http://abcnews.go.com/GMA/OnCall/Story?id=4760023&page=1

DLE's Big Give for Gabrielle LaVerde on 04/24/08

2008-05-02T12:25:00.000-07:00

To date, Deltona Lakes Elementary School has raised over $10,500 for our 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 acount is for her trip to receive experimental treatments in an attempt to save her life.

Here's a review of their fundraising spaghetti dinner that was held just last week, written by Gisele Veilleux. The link to watch the youtube videos is below:

http://youtube.com/gabrielle824

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.

DLE's Big Give!

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

Thank you Letter read by Gisele Veilleux to Deltona Lakes Elementary at a Fundraising Dinner for Gabrielle

2008-05-02T12:21:00.000-07:00

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

Welcome

2008-02-20T13:36:00.001-08:00

Welcome to Gabrielle LaVerde's Blog. My name is Danielle LaVerde, and I will be adding comments to this blog to help increase awareness, provide information, and solicit help to find a cure for Niemann-Pick Disease Type C.

Danielle