Turning Tragedy into Hope

January 16, 2024 | by Jennifer Gutierrez
Turning Tragedy into Hope

In 2005, Carolyne and Ben Koos endured the tragic loss of their young son, Christian, at the age of 2.

After suffering a grand mal seizure at three months old, Christian’s health continued to decline. He spent the next two years in and out of the pediatric intensive care units (PICUs) at the Salah Foundation Children's Hospitals at Broward Health Medical Center and Broward Health Coral Springs under the care of the team at Pediatrix® Critical Care of Florida, including Jackson Wong, M.D., Jorge Del Toro, M.D., Joseph La Spada, M.D., and Venu Devabhaktuni, M.D. The Koos family ultimately learned that Christian had a genetic neurological disease called leukodystrophy, which causes a progressive loss of neurological function and is often fatal.

“These doctors were miracles to my little miracle,” said Carolyne. “This group is a different class. There’s a level of care that you just don’t see all the time. While in the PICU, where you think would be the worst place ever, there was this kindness, compassion and peace that stood out to us.”

Christian Koos

During Christian’s battle, the Koos family grew close to the Pediatrix team and have continued to stay in touch during the past 20 years. “I feel like I consider them extended family,” said Carolyne. That extended family now includes Jacqueline Machado, M.D., Mahreen Siddiqui, M.D., and Nisha Agarwal, M.D.

The group recently reunited at a special event in support of the Koos’ charity.

Helping Children in Need

In honor of Christian, Carolyne and Ben went on to create the Embrace Life Children’s Foundation, a non-profit organization dedicated to helping chronically and terminally ill children. “It sort of took off,” said Carolyne. “We just followed our heart.”

For more than two decades, Embrace Life has supported the hospitals where Christian received care, working with the facility’s child life advocates and social workers to determine and meet the needs of their pediatric patients. It is 100% volunteer driven.

“A lot of parents might deal with their pain in a positive way by helping other families,” said Carolyne. “We’re all called to look out for one another. Life’s hard, there’s no question. We should do whatever we can do to make things a little easier for one another and instill a little hope, faith and encouragement.”

In the fall of 2023, Embrace Life hosted an intimate event at Broward Health Medical Center with local janitor-turned-artist Joseph Gormley, known for his portraits of legendary soccer star, Lionel Messi. A select group of clinicians, including Drs. Agarwal, Del Toro, Devabhaktuni and La Spada, were on-site to add a single brush stroke to Gormley’s latest Messi painting as part of a community-wide initiative honoring the unsung heroes of Broward County, from health care workers and firefighters to law enforcement and local government.

“The painting is a total collaboration of what can happen when you take different groups of people all with the same heart for change,” said Carolyne. “It’s a representation of the good that can be done and the very real and amazing change we all can make when we care for and watch out for one another.”

The portrait was recently presented to Messi as a welcome gift to the South Florida community. Gormley previously had four of his Messi paintings autographed by the soccer star himself and is in the process of auctioning them off for charity.

Del Toro

“There are no words, just really heartfelt appreciation and love for what the Koos’ do,” said Dr. Del Toro, founding medical director of the critical care practice who now serves as vice president of medical affairs at Pediatrix Medical Group. “They’ve taught us a lot about what it means to be going through these things both as a provider, a physician and team and certainly a parent.”

Dr. Devabhaktuni, current practice medical director, echoed Dr. Del Toro’s sentiment. “The Koos’ are special people in my career, for sure,” he said. “Parents teach us a lot in every situation. It’s amazing to see how they’ve come out of this and what they’ve done since then.”

Learn more about our pediatric services or find care in your area.