Saving Gabrielle LaVerdefrom Niemann-Pick Type Cknown as Early Childhood Alzheimer’s |
Who is Gabrielle LaVerde?
Gabrielle LaVerde is a delightful and adored 7-year-old little girl who has been diagnosed with a fatal and rare disease, called Niemann-Pick Type C. The disease is considered an orphan disease since there have only been 500 known cases worldwide. The disease itself renders its victims with Alzheimer’s-like symptoms—victims move backward in time and forget how to perform basic functions, such as talking, walking, eating, chewing, swallowing, and breathing.
What does this mean? It means that Gabrielle, and other children like her, who suffer from this disease regress. The baby that learned how to talk, the toddler that learned how to walk, and the young child that learned how to play, forgets how to do all of these things, as they travel backward in time to their infancy, and lose their memories. |
Gabrielle LaVerde |
Young Boy Tries to Save Little Girl Gabrielle LaVerde |
Gabrielle on Fox 35 withShay Harris in May, 2008 |
A Mother’s DiaryAbout Niemann-Pick |
Who is Gabrielle LaVerde?
Gabrielle LaVerde is a delightful and adored 7 year old little girl who has been diagnosed with a fatal and rare disease, called Niemann-Pick Type C. The disease is considered an orphan disease since there have only been 500 known cases worldwide. The disease itself renders its victims with Alzheimer’s-like symptoms—victims move backward in time and forget how to perform basic functions, such as talking, walking, eating, chewing, swallowing, and breathing.
We first learned of Gabrielle’s diagnosis in October, 2007. Gabrielle’s elementary school classmates were horrified to learn that her disease was fatal, and that there was no cure, miracle drug, or surgery that could save her. Her classmates quickly rallied support, not only from their parents, but from the entire Deltona community to help pay for the experimental treatment. The outpouring amount of encouragement, support, and prayers that the LaVerde family has received has been phenomenal. The elementary school students raised over $10,800 in less than 3 months.
The purpose of this website is to:
· Increase awareness of the disease known as Niemann-Pick Type C · Create awareness about Gabrielle LaVerde’s condition · Share with supporters recent and upcoming events to help Gabrielle. · Special Thanks to Lloyd Marcus, Deltona Lakes Elementary School, the City of Deltona, and the citizens of Deltona, for your ongoing support.
Website & YouTube Videos designed & donated by www.GiseleVeilleux.com |
And a Child Shall Lead Them |
And A Child Shall Lead Them
We first learned of Gabrielle’s diagnosis in October, 2007. Gabrielle’s elementary school classmates were horrified to learn that her disease was fatal, and that there was no cure, miracle drug, or surgery that could save her. Others learned that because the disease itself was so rare, the medical community offered no options for a cure, and the insurance community offered even less. The news, however, did not stop her classmates after the LaVerde’s shared a ray of hope for an experimental treatment outside of the United States. After January, 2008, her classmates quickly rallied support, not only from their parents, but from the entire Deltona community to help pay for the experimental treatment. The dedication and hard work that Gabrielle’s classmates showed to their community, made it clear that the kids were not going to let Gabrielle die on their watch (video shown on right).
In February of 2008, the students had already raised close to $3,000, when one 4th-grade student, Ryan, strongly urged his mother to get involved—that mother is me. Ryan’s plea and insistence (video shown on right) made me move into action, and start designing youtube videos, not only for Gabrielle, but videos to show the support and encouragement of Gabrielle’s classmates, the students from Deltona Lakes Elementary. Shortly thereafter, I created this website for Gabrielle to:
· Increase awareness of the disease known as Niemann-Pick · Create awareness about Gabrielle LaVerde’s condition · Share with supporters recent and upcoming events to help Gabrielle.
News of the children’s fundraising efforts spread, and the local media started to pay attention. It was then that reporter Kathleen Rasche contacted performing artist Lloyd Marcus to help. Since then, Mr. Marcus has been instrumental at creating awareness and organizing benefit concerts for Gabrielle.
Early during Mr. Marcus’ involvement he asked that the LaVerde’s and I join him to speak to the Deltona City Commission. At that time, the students had raised $10,800 for Gabrielle to travel to and receive the experimental treatment that everyone hoped for. It was then that Mayor Mulder was informed of the student’s achievements and Gabrielle’s condition. With the support of the City Commissioners, he announced that he would present a proclamation to create “Deltona Lakes Elementary School Day”. He also summoned the support of Brighthouse networks to sponsor a pizza party for the students. It was the last week of school and I was there that day, taking photos and video, and I can’t tell you how proud the students were—just to be recognized, meet the mayor and have all the pizza they wanted! Detailed information and videos of students achievements can be found on the Deltona Lakes Elementary Page.
What did we learn?
We learned that it was the children that carried the torch, and the adults simply followed their example.
We learned that when the children were left to use their own creativity, and free to follow their hearts, they themselves came up with fundraising ideas that we adults simply supported.
We learned that when we listen to our children, wonderful things happen.
We learned that when we adults face overwhelming odds—odds that make us feel like we can’t possibly make a difference—odds that make us feel defeated so we don’t even try, when all we have to do is look toward our children to find the strength to make it happen. We teach our children to “never quit”, yet in the case of these elementary school kids, we couldn’t possibly deny them the freedom to try, and what they accomplished may never be duplicated again.
It will never be forgotten, that the fight to save Gabrielle started with the elementary school students of Deltona Lakes. |
Gabrielle is traveling backward in time |
Gabrielle is Traveling Backward in Time
This is why the disease is referred to as Childhood Alzheimer’s. In the video shown on the right, you will see for yourself how Gabrielle is truly traveling backward in time, for the Gabrielle we know today does not know how to talk, walk, or play, yet she did all of these things before the disease claimed her. This beautiful 7-year-old child that we all know and love will soon be just as she was when she was an infant.
As you review this website, you will relive the events that have taken place since Gabrielle’s fatal diagnosis, you will see for yourself, how it was her elementary school classmates that stood up and took a stand to save her life, as if to say “not on my watch”. You will read how not only how the community, but the city’s mayor recognized and praised them for their heroic and unselfish acts of kindness. You’ll read how these youngsters moved parents, businesses, the news media, and elected officials to act. Yet the fight to save Gabrielle LaVerde has just begun.
|
|
Lloyd Marcus & the Savin’ Gabi Benefit Concert
One short week after school resumed on August 30th, 2008 we all got back to work and met at Lloyd Marcus’ first Savin’ Gabi Benefit Concert. Even though we were barely recovering from Hurricane Fay, the storm did not stop the performers or the supports from joining us. There, Morris Wiener, PBS TV Star painted a landscape to be auctioned at the Benefit Concert. Later, world power lifting record holder and race car driver, Davey Gibbs won Mr. Wiener’s landscape. The Kiwanis of Deltona presented their donation of $1,000 from fundraising performed on July 4th.
The next day, I was contacted by one of the performing groups at the benefit concert, the Panteras Latin Dancers of Pine Ridge High School. Their sponsor, Ruth Garcia informed me that the group was planning a car wash benefit for Gabrielle—and the beat goes on!
Where are we now?
Because of all of this generosity, the LaVerde family has been able to provide Gabrielle with the potentially live-saving experimental treatment. But our work doesn’t stop here. Over the next six months, we will be monitoring Gabrielle’s progress, we will continue to increase awareness of this horrible disease, and we must continue to support these treatments in order to give her a chance to live a normal life. If we are successful, we could potentially be paving the way for other children, who not only have this disease, but other genetic disorders as well. |
|
Gabrielle is in this week’s National Enquirer—Pick up the December 29th edition, and view the last page, “Acts of Kindness—First Class Kids” |
Coming SoonLloyd Marcus Records “Save Gabi” CD |
|
Powered by GiseleVeilleux.com |
|
One Year Later …. Written by Danielle LaVerde
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, rushed by my side to help save my daughter.
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 a glimpse of hope.
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 |