RARE Daily

A Call for Compassion

March 23, 2020

It was only about a month ago that Emily Knakmuhs’ daughter Kennedie went out for her first ice cream cone, right before the first case of COVID-19 infection was detected in the state of Colorado, where she lives. After working through her own ice cream cone, Kennedie turned her attention to her brother’s sundae before her mother had to pull her away from it.

Kennedie, who is two-and-a-half, had been diagnosed almost two years earlier with progressive familial intrahepatic cholestasis (PFIC), a rare and life-threatening liver disease that prevents bile from moving from the liver and impedes the ability to absorb fats and vitamins. Kennedie’s adventure into the pleasures of ice cream were a brief taste of childhood normalcy following a liver transplant in April 2019.

During the course of her illness, Kennedie’s liver had become so swollen that it pushed on her stomach and she had to rely on a feeding tube for about 18 months. The severity of her condition necessitated a liver transplant. After being physically delayed because of her disease, Kennedie is now able to eat and has been growing.

But while the liver transplant has resolved her PFIC, it has left her on a regimen of immunosuppressants that makes her more vulnerable to infection in normal times and requires even greater vigilance today to protect her from the threat of a pandemic virus.

The COVID-19 outbreak has both complicated life with an immunosuppressed child and made it a bit easier as there seems to be less effort necessary to make others aware of the need to honor practices to prevent the spread of illness that had become routine for the Knakmuhs.

The family has long kept a large dispenser of hand sanitizer by the door and visitors to their home are asked to either remove their shoes when they enter the home or put provided protective coverings on their shoes. Kennedie’s brothers are already well versed on the need for frequent and proper handwashing, know not to share cups and utensils, and keep their distance from people who appear sick.

With the pandemic, Kennedie is staying home. The cleaning routine has increased with surfaces wiped down multiple times a day. Kennedie’s father is working from home temporarily, and her brothers’ schools are closed, and they are unable to have playdates with friends.

At times in the past, people haven’t always seemed to understand the risks an immunosuppressed person faces in routine, daily exposure to others, and the precautions Emily needed to take to keep her daughter safe. The COVID-19 outbreak has on one hand made people more understanding of the challenges immunocompromised people face, and respectful of the need to do things like wash hands and keep their distance.

One thing that concerns Knakmuhs, though, are people who are hoarding essential supplies like hand sanitizers and cleaning wipes and creating shortages or preventing others in need from getting access to such supplies by buying more than they need when shelves are stocked.

“There are people like our family that live like this every single day. It’s not something that any of us take lightly,” said Knakmuhs. “There needs to be some compassion towards transplant families and people with chronic illnesses. You don’t know if those last bottles of hand sanitizer that you see on the shelf that you feel you must keep are truly needed by another family. Nobody needs 27 bottles of hand sanitizers.”

Photo: Emily, Kennedie, and Family.

We’d like to hear from you. What are the challenges you are facing as a result of the pandemic? What are your biggest concerns? What are you doing to cope? Are you facing any particular medical challenges or struggling emotionally as a result of the pandemic? Tell us what you are experiencing.

Editor’s note: this story was updated to correct the date of Kennedie’s transplant.

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