Jessica's New Liver

Biliary Atresia is a rare disease affecting 1 out of 18,000 infants. Diagnosed at birth, my sister, Jessica, has courageously endured a 27-year journey, overcoming many uncontrolled obstacles along the way. For those of you who don't know the intricacies of Jess' condition, here is her story:

At only 2 months old, doctors performed Kasai surgery on Jess, which involved removing her gallbladder and blocked bile ducts, to then be replaced with a segment of her small intestine. The prognosis after the operation was that by age 7, it would be mandatory for her to receive a liver transplant. Miraculously enough, my sister has managed to make it to 27 without needing the transplant, but she is now back to the same vulnerable state she was in as a child, where her current liver can no longer function properly on its own. 

For the past 2 months, Jess has been in and out of the hospital again and received 4 separate surgeries to help clear her blocked bile ducts. Since her first surgery in February, her liver has been operating with the help of a biliary drainage catheter. Unable to return to work or her life back in Boston until she finds a matched liver for transplantation, Jess is presently undergoing care at home. While she's been placed on the waiting list at Massachusetts General Hospital, there is no guaranteed timeframe of when the transplant can take place since her MELD score (calculated score assessing severity of chronic liver disease) doesn't fall within a 'crtical' score. Her score has been consistent around 27, while a 'critical' score is around 30-40. From Jess' standpoint, one can only imagine how frustrating the situation is considering that until her liver's health is at a 'critical' stage, she has to continue living at home with a catheter fastened to her body.

In the mean time, our family has been doing our absolute best to keep Jess as comfortable and happy as possible in the fragile state she's in. Alongside their full-time jobs running a small business and serving at church on the weekends, both my parents have taken on the additional task of primary caregivers at home. Our baby sister, Christy, also provides bedside support and keeps Jess company every day after school. Being the furthest away with my own full-time job in NYC, I've been making as many trips as possible back home to MA to physically be with my family. Right now, it's clear that Jess needs all the help she can get- physically, mentally, emotionally, and spiritually- so that she can be in the best shape prior to her operation, and during the long recovery process ahead.

For those of us who haven't been diagnosed with a chronic life-altering condition, it's easy to take for granted the health we are blessed with every day. It's also painful to see the ones we love in distress from something we will never fully comprehend. Alongside my family, so many of the amazing friends, colleagues, and people who simply know Jess have been asking for ways they can help what seems to be a helpless situation at times.  

In light of those asks, the purpose of this personal campaign is to surround my sister with continued moral support and positivity, while helping to ease the different uncertainties ahead with the amount of medical bills, travel expenses, home care expenses, wellbeing expenses, and recovery processes we can't necessarily foresee.

In terms of an overall price tag for the operation, our family faces uncertainty with coverage since Jess will be unemployed after mid-May and her current health insurance with her job will expire with the disability leave she took. We are taking all financial precautions and ironing out our options for aid, but also preparing for the worst case scenario without insurance coverage, where a liver transplant in its entirety (including pre/post expenses) can cost anywhere up to $500K. In the best case scenario with coverage, the operation will still cost anywhere up to $100K out of pocket. With anyone's willingness to help, our contributions are capable of changing every part of my sister's journey- from an extra set of hands at home, to physical therapy and alternative nutritional foods that will improve Jess' current state for surgery.

For those of you who took the time to read my sister's  story, please know that our family is so grateful for keeping her in your thoughts/prayers. Throughout the weeks and months to come, we will be sure to keep everyone informed with Jess' progress and next steps. On behalf of my sister and my family, I sincerely thank everyone for taking the time to consider supporting this personal cause. As this isn't her first gig, let's give Jess the strength and confidence she needs to cross that finish line successfully again.