Rileys Road to Remission

Riley suffers from severe, refractory Infantile Very Early Onset Inflammatory Bowel Disease. Infantile VEO-IBD is a rare & often fatal disease which affects less than 1% of the worlds current population of children aged 2 and under. It is a subset of a subset category & rare form of Crohn’s Disease. Clinical characteristics of Infantile IBD are different from those of an adolescent or adult onset case with features that are more aggressive & rapidly progressive. There is no known treatment plan & no known cure. Much of the treatment and therapies available are considered research & trail based and not approved by the FDA. Not only does this make it very difficult to obtain insurance approval it also means treatment options are limited as clinical research for cases like hers are also limited.

While she had symptoms from birth, she was diagnosed at 4 months. Today, at 3 years old, she continues to battle this terrible and debilitating disease. In the last few years, we have moved several times for her health and lives in and out of the hospital together with her. She is currently undergoing treatment under the watch of her care team in Cincinnati where we have relocated our family for her medical care at this time. The longer she fights the less time we feel we have to fight her disease. Time really is of the essence. That said, we will be continuing to pursue further treatments which will require more travel. Many of these treatments are out of pocket without insurance support. First and foremost, we ask for your prayers for our girl, our family, and our stamina. After years of living in and out of the hospital and watching our daughter suffer, we are weary. But, we are strengthened by our community and those who petition in prayer on our behalf.

We’ve had many ask where they may donate over the years and we hope this page will offer that for those that wish to support our girls journey to healing. While difficult to bring up, financial support is really the most helpful tangible thing for our family during this time. Any and all gifts will be used for medical treatments, medical travel, and therapies which are not covered by insurance.

Thank you to our community and loved ones. We would not be where we are today if it were not for you and your many prayers. We will never be able to express our gratitude to you.