Emily Knakmuhs, mother of Kennedie

“At the beginning, before we even knew Kennedie had PFIC 2, she was outrageously itchy and we had no explanation as to why. It was a terrible feeling having doctors ask why she was covered in scratches and scabs, and if everything was okay at home. After her diagnosis, she was on three different medications for the itch and it still didn’t stop it. We had to keep her in long sleeves and pants even in the middle of summer. People would ask why we didn’t just give her Benadryl for her itching. People don’t understand that the itch is from deep inside their bodies. We would give her cool baths to give her some relief. I was afraid she would scratch her stomach and pull out her g-tube in the process. As soon as she had her transplant the itch was gone. It was an immediate change and she has been able to wear anything, and more importantly, sleep through the night, which she hadn’t done in her entire life. Transplant can cure the itch, but should never be the only option.”