My sister, Jennifer, is an incredible fighter. Even the strongest fighters need support sometimes, and that’s where we come in!

Jennifer has been battling for her life since she was a tiny baby. She spent most of her childhood in and out of hospitals. Finally, she was diagnosed with a rare autoimmune condition called Fanconi Cystinosis. (You should definitely look that up!) At that time, only about 100 children worldwide were diagnosed with it. At 8, she had her first kidney transplant, and then again at 17 after a year on dialysis. Not exactly how you want to spend your teens! Now, at 40, she’s in end-stage kidney failure and needs her third transplant.

Kidney failure isn’t all. Her eyesight has also taken a significant hit, and her eyes are constantly in pain—a symptom of Cystinosis. She also relies on hearing aids because her hearing is failing and doesn’t seem to be getting better.

As if that’s not enough, her health has taken a nosedive in the past six months. Cystinosis with Fanconi Syndrome has a wide range of issues, but at this time her doctors can’t explain what’s happening to her, and she’s spent most of her time in a hospital bed.

So, how can we help? We can send her prayers and positive vibes, of course. But we can also donate. Please consider donating to help her have a life to come back to. Those who know her are in awe of how much she’s accomplished, including getting her master’s degree, advocating for Cystinosis research, becoming a homeowner, working as much as she can, and being an awesome aunt to her nephews! Did I mention she loves to travel and sky dive? She’s cooler than I am! She also has a very large dog named Mr. Bentley, whom she affectionately calls her baby.

Jennifer won’t be able to work for who knows how long. My goal is to help her not lose her home or worry about her bills while she fights to heal her body, mind, and soul. Please share her story far and wide! Every little bit will help.

*Update*

7/26/25- day 10

After coming in to the ER, Jennifer had been admitted into Baystate and as her symptoms changed, adjustments were made, and Jenn bounced around the hospital to different wings until we eventually landed in the medical ICU. Throughout this process, Jenn has had a lot of little fires that needed to be put out. The decision was made that she needed to be intubated. She was also placed on feeding tubes, an NJ tube, and dialysis has begun. She is holding steady and her team is hopeful that the ventilation will be out soon.

We are all wondering what happened and why her kidney failure happen so quickly and why she had a list of other issues that put her in this downward spiral. At this time there are no real answers. The focus is on her respiratory system functioning as needed, and then each little fire will be addressed again.

We want to thank everybody for reaching out to us to check in and for the donations and all of the love and support that has been shown our way. I will update again when I can. In the meantime, please keep our Little Jenn in your thoughts and continue to share her story.