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Lily Belle's Journey's Fundraiser:

Find a Cure for VWM

Lily Belle's' Photo
Lily Belle's' Photo
Lily Belle's' Photo
Lily Belle's' Photo
Lily Belle's' Photo
Lily Belle's' Photo
 

Lily's UPDATE: 05/11/16
May 11, 2016

Lily had a fall about 3 months ago where she hit the back of her head and it caused her to go limp for about 30 minutes. After that she was able  See more
Lily Belle's Journey

THE STORY:

Lily's story: Lily was born a healthy baby girl on November, 09 2012 She hit all her milestones normally. When she started walking I noticed she walked with her toes in at the age of 1 1/2. I mentioned it to her Dr and she said she was fine and to give her sometime to learn to walk better. In September 2014 she had a low grade fever for a few days and developed a rash. She also lost her appetite and I noticed she was constipated. After 3 days she was better with no fever and wanting to eat normally. I noticed all she wanted to do was sleep and when she was awake she was lethargic. We took her to another Dr that wasn't her regular pediatrician because it was Sunday and they were closed. They told us to go to cook children's ER. They determined that she was in fact constipated and that could be causing her to be lethargic. They admitted her and started her on something called "go lightly" to clean her tummy out. After 2 days or so on the go lightly she started to wake up more and was more alert. She was hooked on IV. They didn't allow her to eat until the treatment was all done. They also wanted her to stay until everything in her tummy was clear. That took about 5 days. Throughout the time at the hospital they ran so many test trying to figure out why she was sleeping so much. Everything was clear... after they removed the IV she was wake even longer and wanted to get up and walk. She didn't walk well for the team so they called in a neurologist and physical therapist. I told them she has always walked this way and that I had mentioned it to her pediatrician and she said it was normal. The neurologist said he wasn't worried about her brain and that she just needed some physical therapy to correct her ankles because they were stiff. On day 7 at our hospital stay they let us go home. 5 months later was Lily's 2 years old check up, I again mentioned the walk to her Dr and said "oh that's not normal, it might be nerve damage" She also said her right eye seemed a bit out of place, something I never noticed before. She referred us to a neurologist. At the end of March 2015 we finally see the neurologist and he said he thinks her spine might have gotten swollen because of th e infection she had back in September. He ordered a MRI and he wanted ASAP! A week later we took her to go get the MRI done. It was so scary to me... the next day we get a phone call from the neurologist office that he wanted to see us ASAP! I knew something wasn't right :( there he went on to tell us that he had found so many abnormalities in her brain that indicates leukodystrophy. I was in shock when he was explaining to us what this was... I felt like someone sat on my chest full force! While he was explaining to us that my Lily bear would die as a child, she was kissing me nonstop and I knew it was because I was crying. After that day we had so many appointments to go to. Genetics, orthotics, vision and another neurologist for botox injections. They ordered alot of blood work to confirm their findings of leukodystrophy. All came back negative! I was starting to get my hopes up that maybe they're wrong! Until genetics Dr sent the MRI to a leukodystrophy specialist in Dallas. The specialist said he thought it was vanishing white matter disease. So they checked her blood for that specific one. 3 weeks later August 11th 2015 I got the phone call "I have bad news for Lily" that is all I heard and I knew. This is any parents worst nightmare... #leukodystrophy "vanishing white matter disease" #VWM The worst day of my life was when the Dr said "your child will die as a child" it's the worst pain imaginable when hearing something like this, both emotional and physical! I don't even know how my body is still functioning after this news. This horrible disease is a very rare genetic disorder and because it is so rare, there is NO CURE! My baby WILL be a angel and there is nothing I can do, but be strong and keep going to make her life as comfortable as possible. This monster will take my Lily's ability to walk, sit up, talk, her ability to see and hear, even eat and breath... until her brain gives out. If you aren't able to help financially, you can help by sharing this page with friends and family and having them share as well is enough help! All the testing was all done within 4 months. As of today she is walking a bit slower than normal she drools a lot more often and her vision is getting worse.

 

UPDATE: 05/11/16

Lily had a fall about 3 months ago where she hit the back of her head and it caused her to go limp for about 30 minutes. After that she was able to sit on her own, but no longer walks or stands up on her own. Both feet go in, when in the beginning it was just the right foot. We had a eye exam 3 weeks ago and they said her vision is getting better, but her right eye is still lazy and out of place. Each day she is using her right hand less and less... If you have any questions please see Lily Belle's Journey on FB or email me at nelytrevino@gmail.com

 

 

Donna Skwirut wrote -

Note: donations made through crowdrise are tax deductible - Crowdrise distributes donations straight to AFTAU.- Every quarter AFTAU sends money to TAU for Prof. Orna Elroy-Stein VWM research

Can you please help us Find a Cure for VWM ?Leukodystrophy known as Vanishing White Matter Disease (VWM) is a degeneration of the brain. Currently there is no cure for VWM. We are in race against time to Find a Cure for VWM !  Time is not on our side; most children born with this genetic disease die at an early age. Research efforts are greatly underfunded and there is little awareness.

To learn more about VWM see this link : http://prezi.com/ja0r4gvbevyz/find-a-cure-for-vwm-leukodystrophy-research/

Update : September 2015 : Did you know September is #LeukodystrophyAwarenessMonth ? 

‪#‎findacureforvwm‬ ~ #WhiteMatterMatters 
Donate to Prof. Orna Elroy-Stein VWM research
via check to AFTAU
AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research
or online:https://www.crowdrise.com/FindaCureforVWM

 

Update 2/3/15: Did you know ? 

"Approximately 50% of the people affected by rare diseases are children ~
30% of children with rare disease will not live to see their 5th birthday" 
Donate to Prof. Orna Elroy-Stein VWM research and save a child's life!

Make a donation via check to AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research

or online: http://www.crowdrise.com/findacureforvwm

In advance, thank you very much for your support !

Update 11/23/14: #findacureforvwm - How would you like to help fund the research ? We have a matching donor! Mr. Cooper will match your donation on a 10 to 1 basis!! For every dollar you donate to this effort (tax deductible) https://www.crowdrise.com/finda...cureforvwm - He will match it with $10. Donate $200 and it will turn into $2200. He will do this up to a maximum of $50,000. This Holiday Season, consider using your money for presents (except for the little ones who have this disease) and donate it for research. There is no better gift you could give-ever. See More
We are desperately in need of continuing research in Dr. Orna Elroy-Stein's lab at Tel Aviv University. We need to find a solution to the deadly effects of Vanishing White Matter Disease. We are losing so many children to this horrible disease.
#givehope:https://www.facebook.com/findacureforvwm/photos/a.341520572655360.1073741832.213513405456078/254002001407218/?type=1&relevant_count=1

XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO

Thank you very much to ALL that have donated to AFTAU since last year. Every dollar is making a difference. Prof. Orna Elroy-Stein is truly working hard to Find a Cure for VWM. With your help, we can raise $ 35,000 and get $ 35,000 donation match. If we can come up with $70,000 it will allow Prof. Orna Elroy-Stein to greatly enhance her staff.

To make this campaign successful - https://www.crowdrise.com/FindaCureforVWM -  we need your help again ...and remember "Together we can Find a Cure for VWM" !

If everyone who has supported or donated so far asks just 5 new friends to donate $10 each in the month of June, we will reach our goal! Help us "Find a Cure for VWM" by sharing this campaign with 5 friends :

If you like this post, share it, AND comment on it, I will send you a "VWM" keychain ! Thank you for your support !!

Update: 8/20/14 ~ To learn more about VWM research see: http://www.elroystein-tau.com/research/  and see  the team:  http://www.elroystein-tau.com/team/  Your generosity is crucial to find a cure for VWM.

Update: 6/4/14 ~ We have a generous donor and he will match every dollar until we have the $70,000. If collectively we can come up with $35,000, he will match the rest so we have $70,000. Please help us raise the funds necessary to find a cure or treatment for our kids before it is too late ! Thank you for your support !

Update: 6/1/14 ~ Need your help ! In order for Prof. Orna Elroy-Stein VWM research to proceed much faster, she needs help in her lab. If we can raise about $ 70,000, she will be able to acquire Ph.D. student and a Post-doc. .

We are in race against time.......the clock is ticking.

Please join Lilly's Mission to Find a Cure for VWM  (https://www.facebook.com/Lillysjourneytofindacureforvwm) ~ make a Make a donation via check to AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research

or online: http://www.crowdrise.com/findacureforvwm

Find a Cure for VWM (https://www.facebook.com/findacureforvwm) is within our reach !

Please share this link  with your friends and family - http://www.crowdrise.com/findacureforvwm  <3

Thank you for your help and support ! Donate now and save a child's life !

Update: 4/15/14~ anonymous donor offered to make a matching donation up to $5,000.00. What this means is your donation is doubled for every $1 you give ~ it will actually be $2 from today until the fundraiser hits $ 5,420.00 !

What is VWM ?

Vanishing White Matter Disease (VWM) is a rare and degenerative brain disease belonging to a group of conditions called the Leukodystrophies. VWM Disease causes the deterioration of the central nervous systems' white matter. There is currently no cure or treatment for this awful illness. As VWM is so rare, there is minimal funding available to continue researching a cure. The average life expectancy of VWM patients is 5-10 years from onset of the disease.

I was once unaware about VWM. I never heard of the disease and did the thought of it ever affecting my life never even cross my mind. But then in 2009, my niece was diagnosed with VWM Leukodystrophy, and ever since that moment I’ve been searching the web like crazy, day and night, trying to help my sister save her daughter. I can still remember clearly the day my sister told me about the MRI results, and how they showed signs of Leukodystrophy. I was devastated, and the more I read about Leukodystrophy the more horrified I would get. My heart sank when in one article I read stated, “These disorders are progressive, meaning that they tend to get worse throughout the life of the patient”.

While there is research currently being conducted, there are no treatment options available for VWM disease. Prof. Orna Elroy-Stein from Tel-Aviv University is one of the few researchers in the world studying VWM disease. She is focused on research surrounding VWM disease and finding a cure for VWM. The process of finding a cure is very tedious and expensive, and consists of several phases. Scientific research is like putting together a huge jigsaw puzzle. It takes months and sometimes years. Currently however, there is no major funding dedicated to VWM research. Without funding there is no hope for a cure, which is why I’ve decided to stop waiting for an answer and put matters into my own hands. I can’t be a scientist finding a cure, so this is what I have to do, raise the money to fund the science. It’s what we all have to do. We don’t have a choice! We’re doing this not just for my niece, but for all kids with VWM. We’re at war with this disease.

My dream is that science and research makes VWM a condition people can live with. I want everyone with VWM to have the ability to live a full, meaningful life. That would be a gift!

They say " money can't buy you happiness" but when it comes to research money can help Prof. Orna Elroy-Stein to Find a Cure for VWM ! ....~ "The more money is restricted to VWM research.... the more projects researchers can run. Money allocated to VWM will keep Prof. Orna Elory-Stein working towards finding a cure and it will minimize her stress to find research funding. Prof. Orna Elroy-Stein is determine to find a cure for VWM and donations, through the American Friends of Tel Aviv University (AFTAU), are vital to ensuring VWM research can continue. This is because grants do not cover the full costs of research, especially the purchase of equipment vital to VWM research.

Thank you for reading this post, spreading Leukodystrophy awareness and being a citizen scientist !

Without your support Prof. Orna Elroy-Stein and her team would not be able to do their work. Every gift makes a difference. Thank you!

 Funds + Research = Find a Cure for VWM = HOPE!

Checks can also be sent to AFTAU:

Make a donation via check to AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research

To spread awareness see: https://www.facebook.com/findacureforvwm

and see this link : http://southtownstar.suntimes.com/photos/galleries/index.html?story=21752529

 

 

 

DONATE

To This Fundraiser

$130

MONEY RAISED
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  • Lily Belle's Journey

    $20

  • For Lily Belle

    $20

  • Anonymous

    $25

  • Mom & Dad & Nadia

    $20

  • Nely, Malik & Nadia

    $20

  • Nely Trevino

    $25

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Fundraise for this Campaign

The Team: $112,455 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Find a Cure for VWM Leukodystrophy

Amount Raised

$69,711

 

14% Raised of $500,000 Goal

Fundraiser Title

Bethany Jones

Amount Raised

$13,916

 

278% Raised of $5,000 Goal

Fundraiser Title

Rachel Schonbachler

Amount Raised

$10,560

 

1056% Raised of $1,000 Goal

Fundraiser Title

Erika Mealhow-Havlik

Amount Raised

$8,860

Fundraiser Title

Sam vs VWM

Amount Raised

$3,761

Fundraiser Title

Alexis Conrad

Amount Raised

$3,275

Fundraiser Title

Angel Gallegos

Amount Raised

$1,110

Fundraiser Title

Sweet and Spunky Savannah

Amount Raised

$575

Donor Comments

Nely Trevino

Nely Trevino

DONATION: $25

Lily Belle's Journey â?¤ 9 months ago

Nely, Malik & Nadia

Nely, Malik & Nadia

DONATION: $20

In honor of Lily Belle 2 years ago

Mom & Dad & Nadia

Mom & Dad & Nadia

DONATION: $20

<3 in honor of Lily Belle 2 years ago

Anonymous

ANONYMOUS

DONATION: $25

2 years ago

For Lily Belle

For Lily Belle

DONATION: $20

From Attorney Patrick Curran 2 years ago

Lily Belle's Journey

Lily Belle's Journey

DONATION: $20

<3 Lily Belle's Journey 2 years ago