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.
The Ruben Family
For more information and updates about our family:https://www.facebook.com/savetherubenboys
For more information about NPC: