Ethan Henry Lecours



The Ethan Henry Lecours Foundation is a 501(c) (3) non-profit organization whose mission is to provide support to families and organizations, caring for individuals with developmental disabilities and special needs.

Since the moment he was born on October 30, 2007 at Women & Infants Hospital, our son Ethan endured many illnesses and procedures that most adults do not encounter in a lifetime.  He was our heroic little fighter who had an amazing determination and spirit from his very first breath to his last on January 25, 2011. Ethan passed away at the age of three.

Immediately after he was born, he was rushed to the NICU (Neonatal Intensive Care Unit) and remained there for 64 days. Within a few hours of his birth, we learned that he had a cleft palate and other birth defects, but that didn’t begin to prepare us for what was to come.

During this stay, he was transported to Children’s Hospital Boston to undergo a procedure on his heart.  He was also struggling to breathe on his own and was intubated so that a machine could breathe for him.  While he was having heart surgery, he also had his tongue tacked to his lower lip in hopes that it would clear his airway and he would be able to avoid a tracheostomy.

Little did we know at the time, that would prove unsuccessful and a tracheostomy would be his fate in April 2008.

On January 2, 2008 we took our little miracle home on oxygen and with an NG (nasogastric) tube in his nose for feedings.  He would have periods of apnea and required an apnea monitor and a blood oxygen monitor.  We were excited and nervous to finally get him home.  We had a lot of training to learn all of this medical equipment, but we were so not prepared for the frightening turn things would take.

Four days after being home with Ethan, he was struggling to breathe, even with oxygen.  We rushed him to Hasbro on January 6,  for the first of what would be multiple times to the ER and the PICU (Pediatric Intensive Care Unit).  We fell into a pattern of him coming home for a short while (5 days was the longest), to returning back to the ER for a few weeks or even month long stays.  There were a few very close calls with him.  He really always kept us on our toes.  We never imagined what would happen next.

Throughout our admissions to Hasbro, we learned Ethan had a debilitating seizure disorder.  He underwent powerful steroid treatment to try and stop the seizures, but it was to no avail.  We  even ordered a special drug from Canada (which is now FDA approved in the U.S.) that kept them at bay for some time.  In August 2008, he underwent several procedures at Children’s Hospital Boston and was given a dose of a synthetic steroid which miraculously stopped his seizures.  He never had another seizure after that one dose.  This had truly dumbfounded his neurologist at Hasbro and at Children’s.  Since this, I believe in miracles…they do happen!

After a few admissions to Hasbro for repsiratory distress, the attending PICU doctor insisted he receive a tracheostomy tube to help him breathe.  We had way too many close calls and she was not going to let this happen again.  This also meant he would receive a  Gastrostomy Tube (G-tube) to eat.

Ethan was ventilator dependent and required 24-hour care.  We cared for him at home for quite some time.  Steve quit his job and became a stay at home dad to care for him full-time and manage all of his appointments.  Even though Ethan had a ventilator, he still continued to have many battles with respiratory illnesses.  He was also very susceptible to viruses and infections.  He continued to spend most of his time at Hasbro.  ER admissions to Hasbro became way too familiar and part of our regular routine.  Ethan’s care and overall wellness came to a point where he needed full-time respiratory therapists and nursing care.  One of Ethan’s specialists suggested we consider placing Ethan at a pediatric facility.

In January 2009, we placed him at Tavares Pediatric Center in Providence, RI.  It was one of the hardest, yet, most selfless decisions we ever had to make for him.

Tavares provided us with peace of mind that Ethan was well taken care of day after day.  The nurses and staff loved and cared for him with no boundaries.  They made sure he was always comfortable and had him participate in all kinds of activities.  Above all, they provided us and our family with support and compassion, especially on days when we needed it most.


Although 2020 was a year filled with so much uncertainty... Our foundation proves it was also a year filled with so much love and support.

Together we successfully completed grants for 8 families throughout the year! These grants consisted of adaptive bikes, safety equipment and required special therapy sessions!

Not only did we support local families but we were also able to fund our Annual Holiday Drive for the Tavares Pediatric Center!

We can’t THANK our sponsors, families, and friends enough for their contributions and fundraising participation (virtually) throughout 2020! Because of you, our Foundation out of little Rhode Island contributed over $20,000 in 2020 to these families and organizations in need!

Now let’s see what we can conquer with your continued support in 2021

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Time to save the dates for 3 of our most amazing events happening in 2021

10TH ANNUAL Walk-A-Thon Sunday May 23rd 

Virtual start at Noon

8th Annual Golf Tournament Friday August 6th @ Crystal Lake Golf Course in Burrillville, RI

10TH ANNUAL Wish Upon A Star Gala Saturday October 23rd (location TBD)

Since there is still uncertainty with the COVID-19 pandemic, please stay tuned for more information regarding the mentioned events. We will be sure to provide updates as the events get closer based on local and state restrictions.



Professional experience: Julie graduated from Johnson and Wales University with a bachelor’s degree in international business, while working full time at Fidelity Investments. She has been with Fidelity since 1997 and is currently a senior instructional designer.

What the foundation means to Julie: “The Ethan Henry Lecours Foundation means the world to me. It provides me with a special connection to my son, a very special boy whom I miss so dearly. Ethan was truly a commendable little soul who exemplified determination and a will to fight on a daily basis. This foundation is our way to honor him and to carry on what he was just starting to do: to show people that special needs kids are truly just that—special.

Ethan was a blessing and a miracle. He had a will to live and I believe was given to us to teach us a lesson and to pass it on. He opened my eyes and taught me so much more than I ever had the chance to teach him. On many levels, he taught me acceptance. Through the work of the foundation, I hope we can inspire others the way he inspired me. Tavares Pediatric Center was our home for almost two years and was instrumental for Ethan and for our family. This foundation is a way for us to give back and to honor all of our special friends at Tavares Pediatric Center.”


Professional experience: John is employed by the state of Rhode Island Senate in two capacities: He is reading clerk of the Senate and director of constituent services for the office of the president of the Senate. He also serves in a number of civic capacities, including the board of directors of the Pawtucket Redevelopment Agency, member of the Pawtucket Riverfront Commission, executive director of the 2011 Pawtucket Arts Festival, and president of the St. Anthony Church Holy Name Society. John was also a member and past president of the Pawtucket Jaycees and a member of the Woodlawn Community Development Organization.

What the foundation means to John: “I sincerely hope my personal and professional experience will help to advance the cause and the mission of the Ethan Henry Lecours Foundation. Ethan was a unique and special child who had an extraordinary gift of touching the lives of all who met him while also bringing people together for the good of others. We should all walk in those same footsteps. With this foundation he provides our path.

I have known Steve Lecours for more than 35 years. More than friends, I consider Steve, Julie, Zachary, and Ethan to be family. I am proud and humbled to be a member of the board of trustees for the Ethan Henry Lecours Foundation. I believe in the mission of the foundation to help provide support for families and organizations caring for children with special needs. The values of the foundation and its mission are ones we try to instill in our own children. As a former Jaycee, it speaks to our creed that “Service to humanity is the best work of life.”


Professional Experience: Guiomar has been employed by FM Global since 1999 and is currently the digital solutions specialist in the client service & sales department. She also worked in human resources and corporate communications. Previous community service includes teaching 7th- and 8th-grade CCD. She has also served on a United Way Committee at FM Global and volunteered for Days of Caring with the United Way.

What the foundation means to Guiomar: “I am serving as a trustee on the Ethan Henry Lecours Foundation because of the love for my godson, Ethan. Ultimately, my goal is to keep Ethan’s memory alive and, God willing, to make a difference in the lives of these special children.

Ethan gave me a different view on life about what really matters. To see his fight for life, his perseverance and dedication, gave true insight to having trials and tribulations. Every day we may complain about working too hard, life being too hard and not having enough time for everything. However, we should be grateful for all those opportunities and everything we have. Life is not easy, but every day that you don’t have to be in a hospital and you are able to live life to the fullest is a gift that should be treasured. For a young child who went through so much in his short life, his smile showed the true meaning of life and why it is worth living. He will be forever missed. His perseverance gives me the desire to move on and fight for a happy life–one worth living.”


Professional experience: Employed by Fidelity Investments for more than 20 years, Rick is a fund administrator in Smithfield, R.I. Throughout his tenure at Fidelity, Richard has held a variety of roles, which provides him with a
great background for the foundation.

What the foundation means to Rick: “I am honored to serve on the Ethan Henry Lecours Foundation board of trustees to support its efforts to honor Ethan, whom I will always think of as “the little guy.”


Professional experience: Michaela works in the executive office at Pawtucket Credit Union. She also assists the vice president of marketing with various projects. She has more than 20 years’ experience in childcare development, beginning as a nanny and eventually becoming certified as an infant, toddler, and preschool teacher. She was a kindergarten assistant and operated her own home day care. It was during that time she had the pleasure of working with teachers and physical therapists from Meeting Street School to incorporate different types of activities (physical and speech therapy) for children with delayed physical and developmental challenges such as crawling, walking, and speaking.

Michaela has an Associates in Business Administration and also holds a Paralegal degree.

What the foundation means to Michaela: I have been friends with Julie and then Steve since high school. Watching them go through the experiences they have has been both heart-wrenching and warming at the same time. They inspire me to be a better person. What better way is there to honor a courageous little boy, Ethan, than to work with the foundation his courageous family began? I am honored and humbled to be a part of the Ethan Henry Lecours Foundation!


Professional Experience: Alexia has been employed by FM Global since 2016 and is currently a Global Processing Specialist. She was previously in the martial arts and fitness industry from 2010 - 2016. Community service includes youth cheer-leading coach for Johnston recreational sports.

What the foundation means to Alexia: “This foundation will forever hold a special place in my heart. Although I remember the days of sadness, they will never outweigh the days of happiness I witnessed through Ethan’s life. Ethan’s smile was always able to light up a room and through this foundation it still does. Even being so little he taught me so much about love, strength and courage. Now being able to share his story while helping families through their difficult times is a magical feeling I cannot describe. I am not only honored to have a place on this board I am honored be able to call Ethan my cousin.”


Professional experience: Miriam is a freelance writer, author, communications consultant, and ghostwriter. She has more than 25 years’ experience in the marketing communications industry. She has worked with corporate, government, and non-profit organizations. Miriam proudly served in the United States Air Force.

What the foundation means to Miriam: I was inspired by Ethan when I first met him and his spirit is with me still. I am privileged to honor his memory by helping the foundation help others through all the good work they do.


STEVE LECOURS, Events Coordinator

Professional experience:  graduated from Rhode Island College in 1991 with a Bachelor’s degree in Business Management.  I have been in the retail grocery business for over 30 years and currently employed at Dave’s marketplace for the last 10 years as a manager. Also, I have volunteered and coached for Special Olympics for past 13 years.


What does the Foundation mean to Steve:  Creating the Ethan Henry Lecours Foundation was very important to me because it was a way to keep Ethan’s memory alive and to pay tribute a courageous and valiant fighter. The 2 best days of my life were when my sons were born and worst day of my life was Tuesday January 25th, 2011 when my precious son Ethan lost his battle.  Ethan’s death has left an incredible hole in my heart but forming this foundation is allowing me to grieve for the loss of my son while carrying out our mission which is to provide support to families and organizations caring for individuals with developmental disabilities and special needs just like Ethan.


Ethan was only on this earth for a short while but made a tremendous impact on people who have crossed his path, especially his resilience to keep fighting during tough times through his difficult medical journey.    There is not a day, hour, minute that goes by that something or someone doesn’t remind me how blessed I was to have a son like Ethan.  Through this foundation we will be his VOICE to spread awareness that individuals with intellectual disabilities are real people.  


Please note: As part of the grant application review process, we will need a letter or document from a physician or physical or occupational therapist indicating the child’s medical condition.

Please use the link below to access our Grant Application.