Leo’s Story

Guillain-Barré Syndrome.

Leo was a typical 17 year-old. He dedicated time to school, friends, family, music, and performing tricks on his freestyle scooter. You would often find Leo jumping over ramps, rails, or many other obstacles. They never posed a huge challenge to Leo, and there is plenty of video footage to prove it!

That all began to change on December 15, 2015, when Leo felt a tingling sensation on his head and his heels. This sensation continued for days.  Leo’s parents took him to see a doctor at a local clinic where they told him they could not find anything wrong with him. His symptoms became more intense, and he became weak and lethargic. Leo was taken to other healthcare facilities for further assessment. He was told he may have Conversion Disorder, a mental condition in which a person’s neurological symptoms cannot be explained by a medical evaluation.

Leo became so weak that he found it impossible to pick up a fork to eat. One day, as he was getting ready for a birthday celebration his family and friends had prepared for him, Leo fainted in the bathtub. He became unconscious without any warning signs. The fainting episodes continued to occur throughout the following days. In just a few short months, Leo became completely paralyzed. Leo’s ordeal would have broken the average person, but by holding firm to his faith he remained in good spirits. He was admitted to Loma Linda Children’s Hospital (LLUCH), where he was diagnosed with Guillain-Barré Syndrome, a disorder that causes a person’s immune system to attack part of the peripheral nervous system.

Leo was discharged from LLUCH, but continued receiving physical and occupational therapy for three weeks, as part of his treatment. Leo’s condition worsened one day when, while at home with his friends, he suddenly could not breathe. He was readmitted to LLUCH and placed in the Intensive Care Unit, where he had a tracheotomy performed. The tracheotomy allowed Leo the ability to breathe through a ventilator, and a gastronomy tube inserted into his abdomen enabled him to receive nutrients. Leo recalls becoming “skin and bones” during this part of his illness.

On April 28th, Leo was discharged from LLUCH and admitted to Totally Kids Rehabilitation Hospital. Although he was still paralyzed, ventilator and tracheotomy dependent, and continually suffering from other disorders associated with Guillain-Barré, Leo displayed the utmost optimism and often expressed his desire to do whatever it took to regain his health and mobility.

While at Totally Kids, Leo was treated by a team of pediatric specialists. Leo received 15 hours of physical and occupational therapy each week. This therapy included 1 hour of recreational therapy per day, and 24-hour nursing care. Although his mother, Lorena, was at first concerned that Leo would not be able to tolerate such rigorous amounts of therapy, she was elated to see great levels of improvement and how much stronger Leo became each day. The therapy Leo received worked! Each passing day found Leo steadily and gradually regaining his mobility. By the time I met with in him, Leo was able to stand and walk slowly. By this point in his therapy, Leo was also weaned off the ventilator. I could not believe that this was the same kid who had come to us completely paralyzed and ventilator and tracheotomy dependent.

As Leo began to walk again, he spent his free time visiting other patients, encouraging them to keep working on their rehabilitation and to remain positive. Leo continuously expressed the gratitude he felt towards the staff at Totally Kids and Loma Linda Children’s Hospital. He was thankful for the love and affection the staff displayed towards him and his family, and for the encouragement and motivation he constantly received.

On May 19th, Leo was discharged from Totally Kids Rehabilitation Hospital. It was a joy to see Leo walking and breathing completely on his own; even helping his mother place some of his personal items in the car. Leo left Totally Kids through the same door, which only 6 weeks before he had entered through on a stretcher, paralyzed, and unable to breathe on his own.

Leo’s Totally Kids family can hardly wait to see him go back to being a typical 17 year-old. We hope to hear that he is back on his freestyle scooter once again jumping, over ramps, rails, or any other obstacles. Good luck, Leo!