{"id":5,"date":"2023-06-07T00:00:00","date_gmt":"2023-06-07T00:00:00","guid":{"rendered":"https:\/\/cota1.wpengine.com\/cotaforhank\/our-story\/"},"modified":"2025-06-21T10:43:47","modified_gmt":"2025-06-21T10:43:47","slug":"our-story","status":"publish","type":"page","link":"https:\/\/cota.org\/cotaforhank\/our-story\/","title":{"rendered":"Our Story"},"content":{"rendered":"\n
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The Best Father\u2019s Day Gift \u2013 A Son\u2019s Second Chance at Life<\/h1>\n\n\n\n
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June 2, 2025<\/strong> \u2014<\/strong> June is a month full of family and fun, especially on the third weekend when families gather to celebrate dads. Father\u2019s 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\u2019s Day together, thanks to a life-saving kidney transplant from Daddy Rob to Little Hank just 18 months ago.<\/p>\n\n\n\n

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\u2019s amniotic fluid (which protects the baby in utero, regulates temperature and helps the baby\u2019s 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, \u201cThere is distress and the baby is not OK.\u201d 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 \u2026 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.<\/p>\n\n\n\n

Rob and Anika determined they wanted their baby immediately taken to Boston Children\u2019s Hospital. So, at seven days old, their precious baby was transported and Henry \u2018Hank\u2019 Roy was diagnosed with an extremely rare condition \u2014 so rare that Rob and Anika were told it is truly a \u2018one in a million\u2019 situation. Denys-Drash Syndrome \u2013 End Stage Renal Disease is a genetic mutation on the W-1 gene; neither Rob nor Anika have the mutation. According to Rob, \u201cA baby gets 26 genes from Mom and 26 genes from Dad. There is one line in Hank\u2019s 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.\u201d Worldwide, only a few hundred cases have been reported in medical literature.<\/p>\n\n\n\n

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When Rob asked a physician on Hank\u2019s team what the baby\u2019s 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.<\/p>\n\n\n\n

Hank\u2019s pediatric nephrology team at Boston Children\u2019s eventually determined it was time to have the baby\u2019s kidneys removed and undergo a kidney transplant. A transplant social worker at Boston Children\u2019s 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\u2019s Organ Transplant Association (COTA). In May 2023, Hank\u2019s grandmother called COTA to learn more. Within weeks, their signed agreement arrived at COTA\u2019s Indiana headquarters, and the Roy family officially became part of the COTA Family \u2026 and Hank became a COTA Kid.<\/p>\n\n\n\n

The Children\u2019s 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\u2019s 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.<\/p>\n\n\n\n

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On June 24th, a COTA fundraising specialist travelled to Gardner to train the family\u2019s group of volunteers so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA\u2019s 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.<\/p>\n\n\n\n

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\u2019s kidney was removed and transplanted into their baby boy. Rob noted, \u201cHank 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.\u201d<\/p>\n\n\n\n

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When asked about this \u2018Dad moment\u2019 in terms of Father\u2019s Day coming up later this month, Rob said it was rough at the time. \u201cBut there was really no decision to be made,\u201d he explained. \u201cI wanted to save Hank\u2019s 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.\u201d<\/p>\n\n\n\n

Thanks to Dad\u2019s 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 \u2018gamechanger\u2019 for the family \u2026 especially for being able to fully care for Hank at home.<\/p>\n\n\n\n

\u201cCOTA is simply an amazing organization,\u201d Rob said. \u201cWe 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 \u2026 100% of contributions to the COTA for Hank campaign are used for transplant-related expenses.\u201d<\/p>\n\n\n\n

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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, \u201ctruly unbelievable.\u201d<\/p>\n\n\n\n

\u201cWhen we meet a new transplant family at a check-up appointment at Boston Children\u2019s, I always tell them to call COTA \u2026 ASAP! I share that COTA\u2019s goal is simple \u2014 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,\u201d Rob said. \u201cOur 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 \u2026 it was the right thing to do. Reaching out to COTA was the best decision for our family at the time of Hank\u2019s kidney transplant, and will continue to be well into Hank\u2019s future.\u201d<\/p>\n\n\n\n

This Father\u2019s Day, Hank and Anika will be making plans to celebrate Daddy Rob. At some point during a future Father\u2019s 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 \u2018gift\u2019 Rob will ever need is a lifetime of Father\u2019s Days spent with his son. Enjoy Father\u2019s Day, Roy Family!<\/em><\/strong><\/p>\n\n\n\n

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April, 2025<\/p>\n\n\n\n

Here we are in 2025! Hank will be 3 in May and we are hosting our 3rd Annual Golf Tournament: COTA Golf for Hank 3.0 on SUNDAY [not Saturday], September 7, 2025. Hank is doing well, and as he approaches his birthday he is talking quite a bit, loves all his shapes, numbers and letters best. He asks, “How do you spell that?” and “What time is it?” quite frequently!<\/p>\n\n\n\n

This year since the golf tournament has seen a few hospitalizations for illnesses and accompanying dehydrations, as well as another medical procedure associated with his genetic disorder (that caused his kidney failure). His stays are often longer than average, but the doctors and nurses are so wonderful at Boston’s Children’s Hospital, and they give him great care. They also love Anika and Rob too!! Those stays obviously incur expenses, so we thank you for your generosity at all of the fundraisers over the past few years! <\/p>\n\n\n\n

We are pleased to announce that our registration is now open for our third tournament on Sunday, September 7, 2025 at the Woods of Westminster. One big change is that it will take place on Sunday rather than Saturday so please save the date for September 7, 2025 and check out the event page on the sidebar to register.<\/p>\n\n\n\n

We also are announcing that COTA for Hank’s Team will be hosting a bake sale again at the Groton Fall Festival on September 25, 2025.<\/p>\n\n\n\n

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Follow to the EVENTS and to COTA Golf for Hank 3.0 to register as a golfer, single or a team, a sponsor, or to join us at the club for lunch and fun! <\/p>\n\n\n

Chapter 3\u00a0 \u00a02nd Birthday and 2nd Annual COTA for Hank Golf Tournament<\/strong><\/p>\n

Wow!! Hank is 2!! so hard to believe it has been 2 years and the journey has been rocky. Hank is doing incredibly well now and has become a very tenacious toddler! He is saying words, counting and knows his letters.\u00a0 X and T are his favorite!\u00a0 \u00a0Rob has also recovered well at this point.\u00a0<\/p>\n

Our goals for the 2024 fundraising period and COTA For LIFE is to replenish the funds spent this year while Rob and Hank were inpatient, as well as the 2 months staying in Newton and Watertown. Additionally, Hank is not allowed to drink well water, which is the most common as most of us know outside of big city limits, so they invested in a water filtration cleaning system.\u00a0 Now Hank can wash his hands and drink with water directly out of the sink without risk of bacteria.\u00a0<\/p>\n

As the doctors remind the family, a kidney transplant is a treatment and not a cure. Hank is on a number of medications to keep himself healthy and keep his body from rejecting his kidney. This will continue throughout his life, so these funds are so very important for any future inpatient stays he has as well as the cost of medicines and medical equipment.\u00a0 We look forward to seeing a full course again on September 7th, 2024.\u00a0 Please visit the EVENTS page to register or sponsor this event.<\/p>\n\n\n

Chapter 1 Hi ~ This is Henry, but you can call him Hank!  
<\/strong>Hank is the son of Robert Roy and Anika (Madden) Roy of Gardner MA and was born in May 2022 with a rare genetic disorder, Denys Drash Syndrome or DDS, that caused him to have kidney failure at birth.  With the help of Boston Children’s Hospital, Hank was on dialysis at 10 days old, and after an extended hospital stay, he was discharged with the ability to do dialysis at home daily.  At 11 months, they removed his kidneys completely to prevent kidney cancer, another high risk of this rare disorder.  With the help of his excellent care team, a loving family, and a lot of luck, he’s on track to have a kidney transplant!  Hank loves to smile and wave to everyone.  He’s now babbling and really has a lot to say to all the doctors.  Despite everything he has gone through, Hank is a very happy baby, and we’re looking forward to seeing him grow and experience life to the fullest!   #HangwithHankRoy<\/p>\n\n\n\n

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\u2019s 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\u2019s services are free to our families, and gifts to COTA are tax-deductible to the fullest extent of the law.<\/p>\n\n\n\n

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The Best Father\u2019s Day Gift \u2013 A Son\u2019s Second Chance at Life June 2, 2025 \u2014 June is a month full of family and fun, especially on the third weekend when families gather to celebrate dads. Father\u2019s Day is a special holiday for the Roy family of Gardner, Massachusetts. But this year it has even greater significance […]<\/p>\n","protected":false},"author":0,"featured_media":330,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-5","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforhank\/wp-json\/wp\/v2\/pages\/5","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforhank\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cota.org\/cotaforhank\/wp-json\/wp\/v2\/types\/page"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforhank\/wp-json\/wp\/v2\/comments?post=5"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforhank\/wp-json\/wp\/v2\/pages\/5\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforhank\/wp-json\/wp\/v2\/media\/330"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforhank\/wp-json\/wp\/v2\/media?parent=5"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}