Help Ulises Recover from Guillain-Barré Sequels

ULISES DÍAZ ARAUJO is 14 years old and has spent most of his life struggling to regain his health, normal walking and strength in his arms as a result of a severe bout of Guillain-Barré syndrome he suffered at age 5. Ulises is currently in the ninth grade of high school, with a sustained honor roll average and a desire to pursue a professional career that will allow him to help others. He is a chess fan and wants to play soccer again.

Ulises was a boy who intensely enjoyed his tender childhood, playing soccer with the Margarita Football Club team and swimming at the Guatamare sports center in Margarita Island, Venezuela. But shortly after his fifth birthday, this rare autoimmune disease changed his life.

Guillain-Barré syndrome is characterized by an acute inflammatory polyneuropathy that causes decreased muscle strength, loss of sensitivity and motor function in the body, due to the destruction of the membrane that covers the nerves of the peripheral nervous system, which prevents the transmission of nerve impulses between the brain and the muscles. Guillain-Barré syndrome is one of the so-called "rare diseases," affecting between 5 to 9 per 100,000 people, which occurs most frequently in adults and is rare in children. Its causes are not clear, but some prevalence has been observed after acute infectious processes.

Although the disease has a statistical prognosis of full recovery of 80%, in the case of Ulises, the consequences have affected his motor skills to this day. When he became ill and was paralyzed from his shoulders to his feet, he was treated in the intensive care ward of the El Valle Clinic, in Margarita. To walk again and recover, he has gone through a long journey of physiatry rehabilitation at the Luis Ortega Hospital in Porlamar, at the CDI Diagnostic Centers of the Barrio Adentro program, at the physiatry service of the IPAS of the Ministry of Education, and other health services of the private sector in Venezuela. He even traveled twice to Cuba for specialized physical rehabilitation and neurological restoration treatment through government programs, accompanied by his parents, determined to try all the possibilities available to him for his recovery.

At 14, Ulises has difficulty walking because of a disparity in the length of his legs and reduced strength in his right shoulder and arm, consequences of nerve fiber damage. However, he is optimistic and wants to insist on recovery. He is currently a patient at the Children's Orthopedic Hospital in Caracas, where he has been diagnosed with right hemiparesis, bilateral non-reducible pes cavus varus and asymmetry of lower limb length, due to the sequelae of Guillain-Barré. The team of medical experts has indicated that he requires surgical intervention with right tibial osteotomy to lengthen the leg with an Ilizarov type external tutor and a lengthening of the right Achilles tendon. All of this combined with a rehabilitation and physiotherapy exercise plan for the right leg and shoulder, and accompanied by a high protein diet, promises to return him to full and proper range of motion and control of his body.

The time is now, the surgery must be done before he turns 15 next May, and we in his family are determined to support him in his dream of running, swimming and having good balance again, even though the cost of these health services far exceeds our current economic possibilities. That is why we turn to the sensitivity and generosity of those who can contribute to this cause. We have already obtained support from socially responsible institutions such as FundaLASER and the Children's Orthopedic Hospital Foundation.

We invite you to join us in this campaign of kindness to ensure the proper development of Ulises. We have faith in God that by joining forces we will succeed. Our first goal is to raise US$ 6000 to cover the costs of the operation and subsequent rehabilitation treatment. We are open to receiving contributions in money, any amount will be of great help, as well as in supplies, prayers, outreach, and goodwill wishes for this cause.