Jake's Family Pay Expenses for His Clinical Trial

Hi! I'm Dani Howard and I'm raising funds to help our friends Scott and Kim Guile cover the costs associated with their son Jake's clinical trial. They are hopeful that the trial will both help their son and pave the way for other children who are similarly suffering from this rare condition without viable treatment options.

Two years ago, Scott and Kim watched helplessly as their once social and vibrant son Jake lost many of his previously acquired skills. He was disappearing before their eyes. Many doctor visits and tests later, he was diagnosed with a debilitating rare condition called Down Syndrome Regression Disorder. Since it is just newly recognized, there aren't many doctors familiar with it. Some medications have shown promise in helping, but they are 'off label' so insurance does not cover them.

Luckily, Jake has been accepted into a clinical trial in Colorado that starts this month and will require 5 or 6 visits. The clinical trial is paying for airfare and hotel for Jake and his mom Kim, but their family is responsible for their transportation, airport parking, and food during his trips to Colorado to participate in the study. The hotel only has a mini-fridge and no microwave so cooking isn't possible There are not many restaurant options in the area, so most of their meals will have to come from the hotel restaurant, which will become expensive over 9 days. These costs combined with the above-mentioned medication out-of-pocket costs and the time that Kim is taking off from her job will quickly add up to thousands of dollars of unplanned expenses for Scott, Kim and their three boys. All funds raised here will go directly to them to help make Jake's clinical trial affordable for them.