JJ’s Journey: Fighting for His Future ❤️

Our sweet JJ is only 3 years old, but he has already faced more than most people will experience in a lifetime. What should be a childhood filled with carefree days, playing, learning, and growing has instead included hospital stays, surgeries, dialysis, countless medications, and the uncertainty that comes with living with a rare and life-threatening medical condition.

JJ was diagnosed with a rare genetic mutation in the TRIM8 gene, which has caused focal segmental glomerulosclerosis (FSGS), a serious kidney disease. His condition has progressed to kidney failure, and he needs dialysis to keep his body functioning while we work toward the hope of a kidney transplant.

JJ also lives with epilepsy and developmental delays, which add further complexity to his care. Every part of his treatment requires careful coordination, patience, and constant attention. He is so much more than his diagnoses, though. He is our little boy, and behind every appointment, every procedure, and every difficult day is a child who deserves the chance to grow up and experience as much of life as possible.

A LONG AND DIFFICULT JOURNEY

Our family has spent months navigating the complexities of his medical care, including an extended hospitalization at Boston Children’s Hospital. During that time, JJ underwent surgery to have a peritoneal dialysis catheter and G-tube placed, began dialysis, and faced serious complications that kept us in the hospital far longer than we ever expected.

There were frightening moments, difficult decisions, setbacks, and days when all we could do was take things one hour at a time. Watching your child go through so much is something no parent is ever prepared for. We learned to celebrate the smallest victories and hold on tightly to hope, even when the road ahead felt impossible to navigate.

Eventually, JJ was able to come home, but coming home did not mean his medical journey was over. It meant learning how to manage an incredibly complex medical routine outside the hospital while continuing to prepare for the next steps in his treatment.

LIFE OUTSIDE THE HOSPITAL

Today, JJ requires nightly home dialysis, numerous medications every day, ongoing monitoring, and frequent medical appointments in Boston. His treatment plan can change quickly, and his care involves constant communication with specialists, dialysis providers, pharmacies, insurance companies, and medical equipment teams.

Much of our daily life revolves around keeping him safe, comfortable, and medically stable. Even ordinary things that other families may take for granted require planning around his treatments and medical needs.

We are also working toward the possibility of a kidney transplant, which represents so much hope for JJ’s future. Getting there requires continued medical care, preparation, testing, and navigating an overwhelming number of logistical and financial responsibilities.

WHY WE ARE ASKING FOR HELP

Caring for a medically complex child changes every part of your life, including your finances. Between medical-related travel to Boston, frequent appointments, supplies, equipment needs, household expenses, and the everyday costs of caring for our family while managing JJ’s treatment, the financial pressure is ongoing.

We want to be able to focus as much of our energy as possible on what matters most: being there for JJ, advocating for him, keeping up with his medical needs, and giving him the best possible chance at a healthier future.

We know not everyone is in a position to donate, and we completely understand that. Sharing JJ’s story, keeping him in your thoughts, and helping spread the word all mean more to us than we can express.

From the bottom of our hearts, thank you to everyone who has supported our family, checked on JJ, prayed for him, donated, or helped us through the hardest days. Your kindness has reminded us that we are not alone in this journey.

JJ has already fought so hard in his little life. We are going to keep fighting alongside him, one day, one treatment, and one milestone at a time. Our biggest hope is that one day we can look back on these difficult years and celebrate the healthy, happy future we have been fighting so hard for.

Thank you for being part of JJ’s journey. ❤️

With love and gratitude,

JJ’s family