he Embrace Life Children’s Foundation is a non-profit charity organization started by my wife Carolyne and me, after our two year old son, Christian, passed away recently after a long battle with a rare neurological disease.
Embrace Life was the theme of Christian’s life celebration after he passed away,
Embrace Life was the theme of Christian’s life celebration after he passed away, which was the first thing that came to mind when we thought about how precious life is.
His genetic disease, known as Leukodystrophy, can affect anyone from a newborn baby to an elderly person. This disease affects the Myelin or White Matter in the brain, which is the coating on the nerves, just like the coating on a wire. Without this coating, the nerves do what they want, when they want or just don’t function at all. In the most severe cases, the disease can be fatal, as in Christian’s case. The love and devotion to God and our family, led us to start this foundation to let Christian’s legacy live forever.
The love and devotion to God and our family, led us to start this foundation to let Christian’s legacy live forever.
During our son’s battle, we grew close to many doctors, nurses, families and organizations throughout the country. Due to our family living in the Ft. Lauderdale area, we became very familiar with Broward General Medical Center and Miami Children’s Hospital. Dr. Del Toro and much of his staff at Broward General helped us to deal with and understand many problems as they arose. They were also very comforting at the times it was needed. The same goes for much of the staff at Miami Children’s, which is where most of his testing took place. Christian spent many nights at each of the hospitals, along with Carolyne, his brother Jack and me. Being able to spend time with other families and children at the two hospitals sparked Carolyne’s passion, which was making children happy. Even while Christian was still alive, Carolyne would bring gifts, big and small, just to see a smile on a child’s face. This passion continues and helps her deal with the loss of her “Little Angel.” Carolyne speaks with the child life advocates at each hospital to find out the needs of the children and to find out how we can help.
The search for information and hope led us to Children’s National Medical Center in Washington D.C. Dr. Pearl and Dr. VanDerver were extremely kind and helped to answer many of the questions that we had. They were also very compassionate, which is sometimes a hard trait to find in the medical profession. CNMC has one of the leading teams of researchers in the world and they are working very hard to find a way to build or replace Myelin that has been lost.
As mentioned earlier, Christian has a brother named Jack, who was five years old when Christian went to Heaven. As you can imagine, this took quite a toll on his understanding of life and death. By chance, Carolyne saw a quick piece on television about a place in Key Largo called Dolphin Human Therapy. They provided psychological and physical therapy to children from all over the world, by allowing them to work with staff members and swim with dolphins. (No, not the Football team) They allowed Jack to come down for a couple of therapy sessions, which was paid for by grants. This was just what he needed, especially since dolphins are his favorite animals. He had a glow about him and he exuded such confidence during and after each session. We were also able to see the other children who were being blessed with this service and how it affected them. Children with Downs Syndrome, Cerebral Palsy and many other disabilities, are encouraged to apply for a chance to do this extreme animal therapy. Unfortunately, Dolphin Human Therapy has since closed its doors, but we were able to find another organization nearby, doing the same great type of work. We now support Island Dolphin Care in their work with special needs children.
My family supports all of the organizations listed, not because we read about them, but because we were part of them. All of our proceeds are distributed to these organizations and to families on a case-by-case basis. Money that is donated to Broward General Medical Center and Miami Children’s Hospital will be used directly for the needs of the children. The money donated to Children’s National Medical Center will be used for Myelin research. Money given to Island Dolphin Care will be used for grants and other special needs. Other funds are used to support bringing kids and their families to local events, including Harlem Globetrotters, Baltimore Orioles, Florida Panthers, Disney’s High School Musical and more. On top of all that, we do what we can to help families with different needs that might arise such as food, clothing, transportation, medical equipment, utility bills and others.
Thank you for taking the time to learn a little more About Us and I look forward to hearing from you.