Our Story

Chapter 3   2nd Birthday and 2nd Annual COTA for Hank Golf Tournament

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.  X and T are his favorite!   Rob has also recovered well at this point. 

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.  Now Hank can wash his hands and drink with water directly out of the sink without risk of bacteria. 

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.  We look forward to seeing a full course again on September 7th, 2024.  Please visit the EVENTS page to register or sponsor this event.

Chapter 1 Hi ~ This is Henry, but you can call him Hank!  
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

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.

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