Almost Four Years Ago

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

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

Central Florida Prepares Big Give to Save Dying Child

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

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

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

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

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.

copyright protected 2008 - Juanita

Addi and Cassi on ABC's Good Morning America

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