COTA for Timmy

Our Story

About a month before Timmy turned 5, he was diagnosed with a rare kidney disorder called Nephrotic Syndrome (NS). Long story short, his kidneys aren’t filtering his blood properly, which causes him to pee out important proteins in the blood called albumin. Albumin is like a little sponge that pulls fluid into the blood so that it can be excreted. When albumin is low, fluid leaks out of the blood vessels and settles into a “third space” in his body, causing him to swell.

If you’ve noticed that Tim looked different for the past couple of years, that’s why. He’s consistently been carrying around anywhere between 2 and 6 pounds of edema, which typically settles in his face, legs, feet, and abdomen. At his initial diagnosis, he had about 12 pounds of edema because of his condition.

We were told that “most” kids respond to steroids and that “many” kids have a condition called Minimal Change Disease that can be outgrown by puberty. Turns out, neither of these things rang true for Tim. He didn’t respond to steroids. A biopsy indicated that he had a rare form of a rare type of Nephrotic Syndrome called focal segmental glomerulosclerosis (FSGS). The small filters in his kidneys are scarring rapidly and, thus, not filtering his blood properly. 

You can’t grow out of FSGS. The road to recovery became more challenging.

He didn’t respond to second-line medications that were hard on his little body. We spoke with experts across the country and traveled to several hospitals for consults with leading pediatric nephrologists. He was enrolled in a state-of-the-art clinical trial through the Children’s Hospital of Pennsylvania (CHOP). All the while, his kidney function continued to decline, as has his overall health and quality of life, since the kidneys play an important role in overall health and wellness.

He hasn’t grown more than a centimeter since his diagnosis. He’s chronically fatigued more days than not. For a long while, he lost interest in seeing friends – likely due to a growing insecurity about his appearance and ability to keep up with their fast-paced games and play. He’s battling a lot of anxiety, and we fight to keep depression and anger at his situation at bay. And that’s just the tip of the iceberg.

We haven’t seen Tim’s face – his true, unencumbered-by-edema face – in nearly two years. Neither has he. This disease has slowly robbed him of much of his childhood – he’s endured multiple hospitalizations, PICU stays, blood transfusions, and hundreds of outpatient clinic visits for hours-long infusions to provide some temporary relief – and we’d give anything to get it back for him. 

A new kidney appears to be the best option for making that a reality.

In October of 2025, we traveled to the UPMC Children’s Hospital of Pittsburgh (Children’s) for a transplant evaluation. He was subsequently listed on United Network for Organ Sharing (UNOS) national database and approved to receive a kidney from a Living Donor. 

Thankfully, Tim’s dad, Jacob, is a match and Tim, now 7, is scheduled for a transplant in early May. Our family – along with spunky little sister Shay and his GMom and GDad – is relocating nine hours away to Pittsburgh for the procedure and Tim’s recovery, which could take anywhere from two to four months. Timmy is excited about the new kidney, but also admittedly scared and sad. 

There’s a chance the FSGS can recur in his new kidney. Even if it doesn’t, donated kidneys only have a limited lifespan. He’ll need another transplant down the line, and there’s a strong possibility that he’ll need multiple transplants and treatments over the course of his lifetime.

Tim’s journey with kidney disease is far from over. 

That’s why we’ve partnered with The Children’s Organ Transplant Association (COTA) to raise funds in honor of Timmy through his journey with kidney disease. All donations will  assist with a lifetime of transplant- and disease-related expenses, such as medical bills, insurance co-pays, annual travel to Children’s, lodging, and medications. His life has changed forever, and we’re grateful for COTA’s help in working to mitigate the stress and uncertainty he’s likely to face as he grows.

We’re also grateful for each and every kind word, prayer, conversation, good thought, and Lego set that you all have shared with us over the past 28 months. It means so much, and I know it helps to make Timmy feel less alone and less frightened about everything that’s happened to him at such a tender age. 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.