Real journeys. Real hope.
Each family's path is unique. We share these stories with permission, and with deep gratitude.
Hannah's Story
My name is Hannah and I'm a 39-year-old woman who was diagnosed a year ago with Congenital Hepatic Fibrosis. I live in Las Vegas and there are no local hepatologists; the only ones…
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To All the Mothers Who Make Broken Things Beautiful
By Linda Bevec I came across the most interesting bowl in an art shop recently. It sat proudly on a shelf and caught my eye. I picked it up and realized it was broken in several pi…
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Grieving a Chronic Illness
by Jennifer Hill My understanding of grief changed the day my son received his diagnosis. Grieving had always been a way to let go; a process that allowed me to cope with, and even…
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An Unusual Diagnosis
by Jennifer Hill Carter was born healthy and without complications. He was our first child, and other than a mild case of jaundice, we had no indication in those first couple of we…
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Bringing It Home
by C. Zak My son, who is affected by this disease, has sailed through life without much difficulty. He played competitive sports, always had enthusiastic energy, and by most measur…
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My Cure for ARPKD/CHF
By Linda Bevec My daughter Claire was 3 days old and fighting for her life in the NICU when the neonatologist confirmed what he had suspected — enlarged cystic kidneys, respiratory…
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The Roach Family Story
Harrison's Journey with ARPKD We were an average family, myself, my husband and our son. Then Harrison came along. He was planned and much wanted and already loved. My pregnancy wa…
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Aubree's Journey
by Susie Hoguet This is a story of my sweet Aubree, and her story begins in utero. When Aubree was 24 weeks gestation, it was discovered at a routine check-up that I had little to …
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Nico's Challenge
Nico Bellucci, a senior at Westerly High School is creating a video for his Senior Project and needs stories from families who have had experience with ARPKD or live with someone w…
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When Medical Procedures are Ordered
If a test or procedure is ordered and it makes sense, it is easy to go along with. If it doesn’t make sense, then it is difficult to allow. Maybe you need to do a little research a…
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A Baby With No Hope: A Mother's Story
The moment I was told my son would not survive; the world seemed to freeze all around me as I tried to absorb what was just said. My mind battled the information, while at the same…
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ARPKD/CHF, A Transplant Story
My name is Katie; I am a single mother to a four-year-old boy named Joseph who was diagnosed with ARPKD/CHF at sixteen months of age. He received a kidney/liver transplant when he …
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Grieving
Grief is an irrational thing. It does not respond well to reasoning, to soothing, or to being ignored. It lives on its own timetable. It will take your thoughts and your emotions w…
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Beating the Odds, Ezra's Life with ARPKD/CHF
Our son Ezra was born with Autosomal Recessive Polycystic Kidney Disease (ARPKD) on September 12th, 2001. As most of the stories go with ARPKD children, we were given no hope for h…
Read storyOne Mom's Story
Almost 10 years ago our 2nd child, Caroline, was born. She came early… She had a few breathing problems right when she was born, but nothing that required a longer stay than a few …
Read storyChronic Kidney Disease: A Mother's Perspective
In honor of World Kidney Day, I would like to give you my perspective of my son Mikey’s battle with kidney disease. My journey began in 1998 when I gave birth to Mikey. It was a qu…
Read storyRaising Teens With Chronic Illness
by Linda Bevec Ten to twenty million children and adolescents in the United States have some form of chronic illness or disability. Chronic refers to a health condition that lasts …
Read storyParental Observations
“An observant parent’s evidence may be disproved but should never be ignored”, Lancet 1:688, 1951, Anonymous "True weight” and prescribing medications… “When Gary was younger the d…
Read storyFinding a Treasure in Milwaukee
By: Linda Bevec–ARPKD/CHF Mom Most rare things are a treasure of great worth sought after by many. Rare coins, vintage jewelry, an original John Lennon album. But not so with rare …
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