In 2023, my sister Jessica suffered a stroke and heart attack while in a bariatric chamber to address other health issues she was having. Through further testing, she was diagnosed with a rare and terminal disorder, Complement 3 glomerulonephritis (C3GN). In late 2023, she went to see a specialist at New York Presbyterian in regards to a trial medication showing promise in slowing the progression of the disease – unfortunately her kidneys were too far damaged for the treatment, and in early 2024 it was confirmed she would need a kidney transplant.
While going through testing to get herself on the national registry, I consulted with her main hospital and my doctor about donating, learning I had a lot of work on my end to do for that to be possible. But somehow my pleading was enough to test to see if I was a match – I wasn’t, but during this process I learned of the voucher program through the National Kidney Registration- if someone donates on another’s behalf, they receive a voucher so the next match is theirs. So I moved forward getting myself healthy while Jessica battled the illness and visiting numerous hospitals with transplant centers in the northeast to be put in their system. I was finally approved to donate at the beginning of 2025 and donated on June 18th. We are still looking for a match for Jess.
In the past year and change since this began, Jessica and her husband moved in with our mom. She began dialysis and has had numerous hospital stays. Our grandmother passed right before Christmas and, earlier this year, our aunt was diagnosed with two forms of cancer. And throughout it all, our mom has been driving around the northeast to get everyone to their appointments, doing it on her social security because she finally retired after decades as a nurse shortly before everything happened. She’s needed car repairs and while did work occasionally per diem, that has slowed down. Jessica’s dialysis has recently been increased and had another hospital stay and is again taking FMLA from work.
It has been a rollercoaster for my family and, being of humble means, have done the best they can with what they can. It’s been a physical and emotional rollercoaster and now the financial part is taking a toll. And when Jess finally does get to do the treatment post kidney retrieval, it may come with a very heavy price tag.
So here we are. In addition to trying to find Jess a match, I’d like to make it easier for them as much as I can. So if you’re able and inclined to donate, it would help immensely. As a donor I cannot profit in any manner through my donation, nor would I want to – these funds would go to my mom to keep her car running – living in a small town, most of these appointments are drives up to 45 minutes to two hours. It would alleviate the large amount of money on gas and any future car repairs, and it would also alleviate the medical costs associated with Jessica’s current future treatment. It would help our family navigate the unseen part of the journey ahead because there’s still a really long way to go.