"You never know how strong you are until being strong is your only choice" - Bob Marley

That has always resonated with me, but now more than ever.

Chris, my husband of over 20 years, has been diagnosed with a rare and incurable disease called Primary Sclerosing Cholangitis (PSC). It came in fast and hard and is changing the trajectory of our lives in ways that I barely understand. And as hard as it is for me to admit, we need your help.

In October 2022, Chris began feeling ill, but continued to work for as long as he could. By December, he was extremely fatigued, jaundiced and very itchy. He had also lost 20 pounds because anything other than toast and broth made him nauseous and caused severe abdominal pain. He had to stop working. We have been living in a nightmare ever since.

Doctors were unable to definitively diagnose him until February 2023. They said his case had "curious findings" and was a "head scratcher". Because of the lack of diagnosis, we lived with the heavy weight of the possibility of cancer. Finally, after two months of appointments, blood work, imaging, and procedures, they were able to rule out cancer (for now) and diagnose it as PSC. PSC dramatically increases several cancer risks for Chris and he will need frequent screenings for the rest of his life.

PSC is a progressive and degenerative autoimmune disease that attacks the bile ducts, by creating inflammation, scarring and blockages. This causes bile to back up into the liver, damaging it and resulting in numerous infections or cancer. There is no cure and only minimal success at easing the symptoms. The symptoms can be extreme fatigue, brain fog, debilitating itchiness, ascites, jaundice and liver failure. The progression of the disease is unpredictable.

For those of you who may not know my husband as well, Chris is an extremely hard worker. In fact, some would say he doesn't know how to sit still. Chris is always helping others, joking around and fixing things. In our 23 years together, we have created a wonderful life. We have three beautiful children and care for my elderly mother, who lives with us.

Six years ago, at the age of 41, he left his career as a teacher to follow his childhood dream of being a big rig truck driver. He landed a great job as a delivery driver for PepsiCo and loves it. It has been a joy to watch him thrive on his new career path. His job is very physical and demanding. Facing the reality that he may not be able to ever do it again is heartbreaking.

Although Chris has been approved for short-term disability leave through June 9th, he has been denied pay since February 1st. The third-party administrator for his short-term leave continues to deny his claim for pay due to a lack of medical documentation. During this time, we are having to pay all our insurance premiums out of pocket. The loss of pay and increasing costs of insurance and medical bills are causing additional stress.

In the next month, we will meet with a specialist in Boston to get a second opinion and to help determine the disease trajectory and his new physical capabilities.

Your support would help us cover the growing medical and insurance costs, transportation to and from Boston, and keep our family afloat while we figure out what our new normal looks like.

Thank you for taking the time to read this and contribute. We are grateful for your love and support during this time of extreme uncertainty.

And if the only thing you are able to give is the sharing of this fundraiser, thank you as well.

We don’t know what the future will bring, but we are trying to face it together.

Much Love to All,

Kate

To follow along with Chris on his journey with PSC, here are the links to his PSC Facebook and Instagram pages. These pages will also have other ways to give, if that is more convenient for you.

To learn more about PSC, we will post some helpful web pages there, as well.

Our Journey With PSC - Facebook

Our Journey With PSC - Instagram