by Jamie Lasorsa
No parent wants to hear news that their newborn baby is sick, but for Anika and Robert Roy, this
was the unfortunate reality when, their now 15-month-old son, Henry “Hank” Roy was born.
Anika, originally from Sterling where her parents still reside, and her husband Robert moved to
Gardner in 2019 and then a few years later decided to begin their family. They had no idea they were
about to face a very tough road.
In May of 2022, when Anika was just over 36 weeks pregnant, an ultrasound was conducted which
indicated that the amniotic fluid, which not only protects a baby while in utero, but also regulates
temperature and helps the baby’s organs grow, was almost completely depleted. The decision was
made to induce Anika right away. The first week of Hank’s life was a rollercoaster. His health was
failing, he was gaining weight at a rapid pace, and the doctors didn’t have a diagnosis of what was
going on. At 7 days old Hank was rushed to Boston Children’s Hospital and with the knowledge and
expertise of the doctors there, was then, at just 10 days old, placed on dialysis.
Anika and Robert were told that their precious baby boy had an extremely rare genetic disorder
called Denys-Dash Syndrome – End Stage Renal Disease, which causes cancerous tumors of the
kidney’s and in Hank’s case, his kidneys were, although looking normal, not functioning at all. He has
since had to undergo surgery to have his kidneys removed and will require a kidney transplant as
soon as he meets the criteria to do so. Only a few hundred cases have been reported into medical
literature world-wide.
Currently, Hank spends 12 hours a day hooked up to his dialysis machine, and despite this, he
remains the happiest little guy you could ever meet! Hank stole my heart immediately with his big eyes
and bright smile. After meeting with him and his parents, it is apparent where he gets his good nature
from. I can’t express enough how positive, upbeat, and optimistic both Anika and Robert are. “It’s only
as scary as the scariest thing you have been through” says Anika when I asked her how she has
handled all the worry that comes along with hearing your child is in need of an organ transplant. The
Roys have an incredible support system surrounding them, including grandparents, extended family,
and friends.
Hank is extremely lucky however, as not only has his body reacted phenomenally through all the
curve balls that this diagnosis has thrown his way, but also fortunate to discover that his father, Robert,
is a match for a kidney! Because of this, Hank does not need to go onto a transplant list to await a
donor match. In order for the transplant to happen, both Hank and dad will need to meet some
physical requirements. Hank, because he is getting an adult kidney, will have to reach a weight of
22lbs (he is currently 19lbs) and the family is hopeful this will happen towards the end of this year. Dad
is also taking measures to bring his own health to peak condition to be ready for the recovery he will
endure with giving such a gift. “I have no control over this situation, this is one thing I can have control
over, I can donate.” says Robert.
The Roy family is working with an amazing organization, Children’s Organ Transplant Association
(COTA) which will help them raise funds for the many expenses the family will endure during and after
the transplant. Robert will be out of work for a few months after the surgery recovering, and Anika will
be traveling back and forth to Boston Children’s Hospital with Hank every 2 days for blood tests and
check-ups. As you can imagine, all this will come at a tremendous cost. COTA is a charity dedicated to
organizing and guiding communities in raising funds for transplant families that will assist with costs of
transplant related expenses. COTA is helping the Roy’s community raise $50,000 for these transplant
related expenses (medications, transportation, lodging, and out-of-work expenses). Please see below
how you can help by volunteering or donating.
A golf tournament will also be held at The Woods of Westminster on Saturday September 9th, 2023.
Registration is open until August 18th. There will be lots of fun to be had and lots of ways to donate!
For more information about the gold tournament, please check out this website, https://cota.org/campaigns/COTAforHank/events/Golf-for-Life-COTA-for-Hank
Or email: Joan Madden madd466@gmail.com / Coordinator Contributions may also be sent to the Children’s Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana, 47403. Checks should be made payable to COTA, with “In Honor of Hank” written on the memo line. Secure credit card gifts are accepted online at
www.COTAforHank.com. I look forward to keeping everyone updated on Hank, Robert, and Anika’s story!