For those who are fortunate enough to know Benjamin, and be a part of his world, you know what an exceptional human being this kiddo is. He is bright, intelligent, witty, compassionate, empathetic, reflective, loving, kind, generous, and wise. This mama couldn’t be more proud of the beautiful person that he is.

Unfortunately, Ben has recently faced a very frightening health crisis. After experiencing body ravishing fevers of an unknown cause, along with severe bodily pain that left Ben unable to walk, or even move from one position to another, we were instructed to take Ben directly to IU Health Emergency Room. His white blood cell counts were dangerously high, and his blood platelet levels were indicating the possible need for a blood transfusion. We were shocked, but acted swiftly to get him to the hospital.

Amidst the worry, fear, and concern for our child, we were also faced with the current strain of our healthcare system. Benjamin was forced to lay feverish for 14+ painful hours, unable to move his body on the small, barely cushioned ER bed, with nothing more than a loose sheet thrown over it, and a thin blanket. The ER was unable to even provide a spare pillow for his head for 14+ hours!

After finally receiving a hospital room, tests revealed that Benjamin was experiencing severe, systemic, full body inflammation. Every inflammation marker in his body was dangerously high, affecting his heart, liver, and other vital organs. It also caused severe bodily pain and swelling in Ben’s lower extremities making it impossible to walk or even move in the hospital bed. We were told that Ben needed to be transported to Riley Children’s Hospital as soon as possible, and that everything from his heart function to blood platelet levels needed to be monitored hourly.

Again, we were faced with the current strain on the healthcare system, as there were no immediate beds available at Riley, or any other surrounding children’s hospital. So we waited. I laid holding Ben’s body as it nearly convulsed with endless fevers that no medication seemed to be able to temper. After passing two hellish days in this manner, Benjamin was finally transferred by ambulance to Riley Children’s Hospital. The relief that we felt to finally be seen by specialists that could potentially treat whatever was happening with Ben was quickly met with the frightening reality that Ben could be suffering from any number of serious ailments from infectious disease (not COVID related), to oncological. And to attempt to treat him before knowing the exact source could detrimentally worsen his condition. My mama heart sank, but turned toward whatever it was we needed to do.

After enduring days upon days of blood tests, MRIs, multiple EKGs, Echocardiograms, talks around blood transfusions, bone marrow samples, and still continuous pain and fevers, three different specialist teams from Hematology/Oncology, Infectious Disease, and Rheumatology came together gathering in a semicircle around Ben’s hospital bed. 9-12 doctors stood attempting to understand what was happening to our Benjamin. The likeliest of diagnosis was a rare juvenile systemic inflammatory disorder that affected the function of his entire body. A chronic condition without a current cure.

Answers for certain, but not easy ones. For the moment, Ben is being treated with immunosuppressive medication, along with meds to help with his pain and discomfort. He has been able to begin to use his lower extremities with the help of a walker, and is getting relief from the endless fevers. As a family, we are doing everything possible to help Benjamin heal, but we need the support of our community as well.

As many already know, our livelihood is derived from our family run business, Primally Inspired Eats. We have been so incredibly fortunate to have endured the many challenges of navigating our business through nearly two years of the COVID pandemic, not an easy task. And though we continue to operate, we do so on a very thin margin, which also means our family operates on a very thin margin as well. Medical bills, physical therapy, walkers, and even practical things like replacing a now difficult to maneuver loft bed (climbing isn’t an option at the moment) are suddenly very real things for our family. Working considerations we must account for now include the fact that Benjamin’s immune system is being medically suppressed in order to reduce the systemic inflammation, but this means he is also immune compromised, and more vulnerable to infections. Who and what we are exposed to as a family is of great importance to Ben’s overall health and wellness. With the current status of COVID, as well as the flu and cold season upon us, our ability to function at full capacity as a family run business may be impacted.

So here we are asking for any support our community may be able to contribute to help our family endure this moment of crisis and so that we can Help Ben Heal. Only if you are able, please donate below, and please send our Benjamin some healing energy.

With Gratitude,

The Williams Family,

Brandi, Justin, Eleanor, & Benjamin