412
412
3

Save the Ruben Boys

$42,158 of $50,000 goal

Raised by 406 people in 8 months
This April our family was hit with devastating news. We are the proud parents of four beautiful children, Jacob (age 7), Katelyn (age 5), Mason (age 3), and Logan (age 1).  Our oldest, Jacob, in a year went from being a healthy six year old boy running, climbing and playing to not being able to walk, talk, or eat by himself. After a year of desperately searching for answers and watching helplessly as Jacob rapidly lost skills, we received a terrifying answer: Niemann-Pick Type C, which is neurodegenerative, without a cure and fatal.  It is a very rare genetic disorder and is sometimes referred to as ‘Childhood Alzheimers’.

Although our other children seemed healthy, we had them tested as they also had a 1 in 4 chance of also having the disease. After about 4 agonizing weeks of waiting, we were again devastated to find out our 3 three year old and 1 year old also have the debilitating, terminal disease. That means three out of our four children have the awful disease that, without help, will cause them to progressively suffer more and more and then lose their lives. The day we found out was the hardest day of our lives.

Shortly after finding out, we learned of a possible treatment that was available. A treatment that is not yet been approved by the FDA and is available for compassionate use only. Phone calls were made and we found out the treatment included our sons needing a spinal injection of a medicine called VTS-270 under anesthesia every two weeks for the rest of their lives.

We are the only known family that has been diagnosed with Niemann-Pick in Las Vegas. To date there isn’t a doctor local that is available to help with the injections. Our hospital in Las Vegas is working on getting ready to give our boys the treatment, but we don’t know how long it will take. Right now, there are only a handful of hospitals across the country that can offer this treatment which is our only hope in keeping them alive long enough until a cure can be found. We are grateful for this chance, but it involves travel to Los Angeles to Children’s Hospital Los Angeles every other Friday for my three boys. Traveling has been a struggle and expenses add up quickly. Money raised will be used for medical/travel expenses for our family and to further research for a cure.

 The spinal injection of VTS-270 is only a treatment, not a cure. Without more treatments or a cure, eventually the disease will take the lives of all three of my boys. A cure is the only successful way to save my children. But, this treatment will possibly help them to live until then. We are asking for your generosity in helping to give them this chance.

WHAT CAN YOU DO TODAY

1.     Donate what you can, no amount too small and donations are tax deductible.

2.     Share on all social media with hastag #SavetheRubenboys

3.     Email our GoFundMe and these steps to all contacts. 


Thank you,

 The Ruben Family


For more information and updates about our family:

https://www.facebook.com/savetherubenboys

For more information about NPC:

www.fightnpc.org

https://parseghianfund.nd.edu
+ Read More
We are thankful for every single one of you! Our lives are brighter and our burden a little less because of your support and generosity. We are headed to LA for another treatment. Please share our story. #wecandohardthings #prayforacure
+ Read More
Our Gofundme is up and running again! We are so thank for all of your support!
+ Read More
We are having a few administrative issues. Our Gofundme will be accepting donations soon! Thanks for your patience!
+ Read More
Read a Previous Update

$42,158 of $50,000 goal

Raised by 406 people in 8 months
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
MV
$50
Mitchell Vallesteros
6 days ago
DB
$25
David Barth
7 days ago
$25
Anonymous
8 days ago
$50
Mike Wood
26 days ago
$20
Anonymous
26 days ago
WH
$30
Whitney Hobbs
26 days ago
$20
Anonymous
27 days ago
$10
Anonymous
27 days ago
ES
$25
Erin Stokes
27 days ago
MH
$100
Marie Hammon
27 days ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.