Tsunami Wave of Support

Thomas, affectionately known by his family as Tommy Tsunami, came down with a fever on, Labor Day, September 2, 2019.  His fevers lasted for 25 days at home with countless visits to doctors- specialists in Cardiology, Infectious disease, and Rheumatology, including 2 visits to the ER without a diagnosis.  Thomas was not able to start 8th grade because of his illness.  
On Sept 26, 2019 Thomas had difficulty breathing and was rushed to the ER at Cohen's Children's Medical Center in New Hyde Park, NY.  He was admitted to PICU (Pediatric Intensive Care Unit).  He needed a breathing tube, was intubated, and put on a ventilator.  The next day Tommy was in critical condition as the doctors and nurses were unable to stabilize his condition. The doctors had thrown the kitchen sink at him with medication but his body was not responding.   Thomas's body needed to rest and the doctor's needed more time to figure out the cause of his illness.  They recommended ECMO (life support) which came with its own risks.  There was a 50% chance of death during the procedure and Tommy would not be able to survive without it.
The emergency procedure was performed at his bedside as his condition remained critically unstable and he was unable to be transported to the operating room.  These were terrifying moments for his family, especially his loving parents, Annette and Chris, his twin brother Kevin, and big sister Kiera.  Thankfully, Thomas made it through the procedure.  He was successfully put on ECMO.  His family was grateful because he was alive, but still there was no diagnosis.  After 6 days of being on a ventilator and ECMO, Thomas was diagnosed with a very rare auto immune disease, Hemophagocytic Lymphohistiocytosis, simply known as HLH.   
 According to the Cincinnati Children’s Hospital, HLH is a rare disorder of the immune system causing uncontrolled inflammation that damages organs of the body leading to rapid death. A cure is possible but an accurate and quick diagnosis needs to be made.  Unfortunately, many physicians are not aware of HLH. It is often misdiagnosed and/or diagnosed too late. Most patients without access to effective treatments will die of their disease.
In Tommy's case HLH was attacking his lungs.  Once diagnosed and given the proper medications Thomas began to improve.   Eight days after being on ECMO Thomas was stable and removed from life support.  Well over a week later he was able to breathe on his own and removed from the ventilator.  
Doctors are saying his recovery is miraculous.   However, Tommy's recuperation is a marathon. He is slowly recovering, he will need extensive rehabilitation for basic activities, i.e. walking, eating, caring for himself and regaining his strength and stamina. All the basic life functions Thomas will need to be a healthy teenager. 

Funds raised for Thomas will help his family to pay for:
- Medical bills not covered by insurance.  
-Medications not covered by insurance
-Extended leaves from work for his parents. 
-Additional PT and OT services not covered by insurance. 
-Tutoring and Educational services to help Tommy catch up in school.


Any overages in funds will be donated to the following:
-Ronald McDonald House of Long Island
-Cohen's Children's Medical Center
-HLH research. 

Tommy Tsunami’s family is forever grateful for the outpouring of love they have received during this time. Whether you sent a meal, said a prayer, sent a gift, walked the dog, picked up groceries, sent a card, donated to this page etc…it has been appreciated beyond measure and has helped to carry them through the most difficult time of their lives. They are not sure if a simple thank you will ever be enough to express their gratitude.