Help DJ Oagles fight Krabbe Disease

On December 1st, with much anticipation and love, Vanessa and Dave welcomed Damon James (DJ) into the world. A few days later, they received a call that DJ’s newborn screening results came back abnormal.

 

At 6 days old, DJ was admitted to CHOP for invasive testing where it was determined he has infantile onset Krabbe Disease, a neurological condition.

 

While Krabbe is not curable, there are lifesaving treatment options that can help stop the disease progression. Since DJ was diagnosed early as part of his newborn screening, his best chance is to undergo these options.

 

Right now, Vanessa, Dave, DJ (and their pup Penny) are at UPMC Children’s Hospital of Pittsburgh exploring the options that will give DJ a chance of a happy life. This will likely include an umbilical cord blood transfer and gene therapy.

 

The next few weeks and months are crucial for DJ, Vanessa and Dave. They will likely be spending many weeks/months in Pittsburgh, where the best Krabbe specialists in the world are located. This means many nights away from home, countless expenses (medical and travel related), care for Penny, and more.

 

While the medical teams will be caring for DJ, we can all help by lifting Vanessa and Dave up and lightening any financial burden they will incur during this time. No gift is too small and every single penny will go towards the expenses incurred and DJ’s future.

 

This GoFundMe is being managed by Vanessa’s friends, Kelli Jost and Amanda Candelaria, with Vanessa and Dave’s authorization. All money raised will be directly transferred into Vanessa’s accounts. We will try our best to provide updates on DJ going forward.

 

What is Krabbe Disease?

It’s a severe neurological condition which results in the destruction of myelin in the nervous system. Myelin protects the body’s nerves, and so the destruction of myelin causes nerve damage. Communication with the brain and nervous system becomes restricted or lost, resulting in progression of the disease. This results in a loss of the ability to walk, speak, swallow, cough, and more. As Krabbe advances it encompasses all aspects of bodily function.

 

Krabbe is often fatal. However, prognosis may be significantly better for children who receive umbilical cord blood stem cells prior to disease onset or early bone marrow transplantation.

 

Although there is currently no cure for Krabbe, it is treatable. With proactive, comprehensive medical care the symptoms of Krabbe can be well-managed to give the best quality of life possible.

You can also send a donation directly to Vanessa via Venmo, @vanessa-werner.