I should have known from the moment my water broke in a tire shop and I was rushed into an emergency c-section that we were in for an exciting journey with our first child; however, my husband Ruben and I never could have imagined the actual reality of our journey.

 

Joscelyn is a silly, loving and expressive child. She loves to dance and sing, but she especially loves to laugh. Although we didn’t know it at the time, one of the first symptoms of liver disease that Joscelyn experienced was brain fog. That, combined with her energetic personality led doctors to initially believe she had ADHD when she was around seven years old. As a Special Education teacher, I disagreed and we immediately sought a second opinion. After visiting multiple doctors, Joscelyn’s diagnosis remained the same and the recommendation was made to put her on medication for ADHD. It just didn’t feel right, so we declined. I’ve always felt confident in our decision, but it wasn’t until a few years later, after discovering her real diagnosis, that we truly felt validated.

 

In October 2020, Joscelyn had routine bloodwork done but her results were not so routine – in fact, they are what started our journey with liver disease. One day, we were out celebrating our middle daughter, Julissa’s, birthday when I received a call from Joscelyn’s pediatrician. I could tell by the tone of her voice that it was serious. She expressed concern over Joscelyn’s bloodwork and asked us to have the blood test done again to confirm their findings. So afraid and full of worry, we made the decision to interrupt Julissa’s birthday celebration and have Joscelyn’s bloodwork drawn again, that same day. Unfortunately, it was a Friday, which meant we would have to wait all weekend for the results; as parents, we were nervous on the inside, but we had to keep brave faces for our three daughters.

 

Monday morning finally arrived, leaving behind the longest weekend and returning the bloodwork results for which we so desperately waited. After the results confirmed Joscelyn’s severely low white blood cell count and extremely high liver enzymes, her pediatrician immediately referred us to a hematologist. Realizing a hematologist would not be the answer either, they referred us to Nadia Ovchinsky, MD, Director of the Division of Pediatric Gastroenterology and Hepatology in the Department of Pediatrics at NYU Grossman School of Medicine. There, they reviewed Joscelyn’s bloodwork and ran tests to check the condition of her liver. Dr. Ovchinsky quickly discovered Joscelyn had cirrhosis of the liver - and it was a serious case. My husband and I were distraught. We understood how serious the diagnosis was but had no idea how Joscelyn got liver disease or what the diagnosis would mean for her future.

 

Three months and many tests later, in January 2021, Joscelyn was diagnosed with primary sclerosing cholangitis (PSC), a rare autoimmune disease that causes the liver’s bile ducts to become blocked due to inflammation and scarring, trapping bile in the liver where it gradually damages liver cells and causes cirrhosis and in some cases, complete liver failure. Joscelyn’s symptoms mostly consisted of severe brain fog and itching. The frustration of always forgetting things, combined with the constant itch and scratching really began to wear on her. Two and a half years later, in May 2023, Dr. Ovchinsky made the decision to begin evaluating Joscelyn for a liver transplant. Her bloodwork never improved, her memory was getting worse, she was permanently itchy and they had found precancerous lesions on her liver after her last MRI. It was time.

 

On the morning of Sunday, July 23, 2023, we received the call – they had a liver for Joscelyn! In that moment it seemed so surreal and, in so many ways, it still feels surreal. Ruben and I ran to wake Joscelyn up and give her the big news. At first, she wasn’t sure if we were serious, but once she saw the tears in our eyes, she knew we weren’t kidding. She began to jump up and down in excitement, saying “Now I’ll remember things!” Her sisters heard the commotion and ran in to hear the news – when we told them, they too began to cry out of excitement that their big sister would finally feel better soon!

 

We are now three months post-op and we still can’t believe it happened! Joscelyn remembers things now and is beautifully healing thanks to her amazing medical team. My family and I could never express our gratitude to her doctors – they have given us the gift of life and I don’t know how you begin to pay that back. Thanks to their care and expertise, my husband and I were given the chance to watch her grow-up with her sisters and see her continue to be the beautiful soul that inspires us all. Like I said, I wouldn’t even know how to pay that back, but I will always begin and end with, “thank you!”

 

ALF helps families like ours by providing resources, education and support services while advancing advocacy efforts on Capitol Hill and liver disease research. Please join us in support of American Liver Foundation (ALF) this Giving Tuesday with a gift of any amount. Thanks to this year’s generous matching gift donors, your tax-deductible donation will go 2X as far!

 

Sincerely,