June 2, 2025 — June is a month full of family and fun, especially on the third weekend when families gather to celebrate dads. Father’s Day is a special holiday for the Roy family of Gardner, Massachusetts. But this year it has even greater significance because this family of three will celebrate Father’s Day together, thanks to a life-saving kidney transplant from Daddy Rob to Little Hank just 18 months ago.
Anika and Rob Roy were excited to find out they were going to be parents. However, that excitement quickly turned to concern in May 2022 when, at a 36-week ultrasound, it was discovered Anika’s amniotic fluid (which protects the baby in utero, regulates temperature and helps the baby’s organs grow) was almost completely depleted. The decision was made to induce her right away. Adding stress to the situation was the fact that this was occurring during COVID-19 restrictions. After the May 19th delivery, they were told, “There is distress and the baby is not OK.” Their premature newborn was swiftly taken to the NICU, and Rob stood at the hospital not knowing whether to go be with his wife or their newborn son. Rob remembers when they had to leave Hank at the hospital at night they were always receiving constant calls from the NICU … and it always seemed to be bad news. The baby had been born at six pounds but quickly weighed 14 pounds due to massive fluid overload. His blood pressure climbed; his little heart was beating too hard which caused a hematoma on his brain.
Rob and Anika determined they wanted their baby immediately taken to Boston Children’s Hospital. So, at seven days old, their precious baby was transported and Henry ‘Hank’ Roy was diagnosed with an extremely rare condition — so rare that Rob and Anika were told it is truly a ‘one in a million’ situation. Denys-Drash Syndrome – End Stage Renal Disease is a genetic mutation on the W-1 gene; neither Rob nor Anika have the mutation. According to Rob, “A baby gets 26 genes from Mom and 26 genes from Dad. There is one line in Hank’s gene code where something went wrong. There was no way we could have known this before he was born. It is so rare there are not even prenatal tests for it.” Worldwide, only a few hundred cases have been reported in medical literature.
When Rob asked a physician on Hank’s team what the baby’s survival chances were, he was told it was 50/50 Hank would make it to his first birthday. Even though the baby had some major seizures and other serious complications, he did survive. Rob and Anika were determined to take their baby home and start their life together. The goal was to train Rob and Anika to do Peritoneal Dialysis at their home, which was about two hours away from Boston. And from August 2022 until November 2023, they did just that. They were all three in their Gardner, Massachusetts, home where both of them performed dialysis, 12 hours each day, on their son.
Hank’s pediatric nephrology team at Boston Children’s eventually determined it was time to have the baby’s kidneys removed and undergo a kidney transplant. A transplant social worker at Boston Children’s spoke to Rob and Anika about preparing for the many costs associated with a kidney transplant and suggested they might want to research the Children’s Organ Transplant Association (COTA). In May 2023, Hank’s grandmother called COTA to learn more. Within weeks, their signed agreement arrived at COTA’s Indiana headquarters, and the Roy family officially became part of the COTA Family … and Hank became a COTA Kid.
The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
On June 24th, a COTA fundraising specialist travelled to Gardner to train the family’s group of volunteers so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. The COTA campaign in honor of Hank was launched, and the website was immediately available for online donations to assist with transplant-related expenses. The team quickly got to work and in a short amount of time raised more than $83,000. Rob and Anika were overwhelmed and very grateful for this outpouring of love.
As Hank grew stronger while on dialysis, the time came for him to receive a new kidney. In September, Rob underwent the required kidney donor testing and it was determined he was a near perfect match for Hank. On November 16, 2023 (one week before Thanksgiving that year), Rob’s kidney was removed and transplanted into their baby boy. Rob noted, “Hank did great! Dad, not so much. During the removal of my kidney, a major artery was cut and I had to receive 26 bags of blood. It was all OK in the end, however, and we were filled with gratitude.”
When asked about this ‘Dad moment’ in terms of Father’s Day coming up later this month, Rob said it was rough at the time. “But there was really no decision to be made,” he explained. “I wanted to save Hank’s life. It needed to happen and I was going to do whatever he needed. ANY parent would do the same thing. It was not a heroic decision; it was what needed to be done.”
Thanks to Dad’s healthy kidney, Hank is now on the move. Rob says they are working with him to eat food by mouth but he is currently formula fed through a G-tube. Hank is trying to figure out eating; Mom and Dad are fantastic cheerleaders for their toddler. Rob added they are extremely grateful that his Food Aversion Therapy is a transplant-related expense for which COTA funds can be used. Rob is also grateful for assistance with other unexpected transplant-related expenses. The Roys are grateful Hank can take baths in their home and drink water day and night. They described COTA has a ‘gamechanger’ for the family … especially for being able to fully care for Hank at home.
“COTA is simply an amazing organization,” Rob said. “We could not believe the Challenge Grant Program that is offered, which was terrific for us because we have great volunteers working on fundraising opportunities. COTA provides so much transparency for contributors. COTA is managed by national and respected experts. For parents like us, the expense submission process is streamlined, efficient and easy. It is unbelievable to us that COTA does not use any funds raised by community volunteer teams for operations … 100% of contributions to the COTA for Hank campaign are used for transplant-related expenses.”
Rob and Anika are extremely grateful for the team of volunteers, family members and friends, who have stepped up to the plate and orchestrated incredibly successful COTA fundraisers using the templates, expertise and guidance COTA provides. Rob describes it as, “truly unbelievable.”
“When we meet a new transplant family at a check-up appointment at Boston Children’s, I always tell them to call COTA … ASAP! I share that COTA’s goal is simple — they want to help by removing the stress of huge and ongoing costs associated with complicated transplants and recoveries. I always tell them there are no gimmicks and no hidden traps, COTA is simply amazing,” Rob said. “Our transplant social worker shared COTA information with us during one of the darkest moments for our family. Even though, at the time, it seemed like one more thing we had to do … it was the right thing to do. Reaching out to COTA was the best decision for our family at the time of Hank’s kidney transplant, and will continue to be well into Hank’s future.”
This Father’s Day, Hank and Anika will be making plans to celebrate Daddy Rob. At some point during a future Father’s Day, Hank will likely hear the story about Daddy donating one of his kidneys so he could grow up to be healthy, strong and full of life. But the only ‘gift’ Rob will ever need is a lifetime of Father’s Days spent with his son. Enjoy Father’s Day, Roy Family!
