Roy Fleming ‘s Recovery Fund

Roy has a very rare diagnosis of Costello Syndrome. This diagnosis causes developmental delays, skeletal (bone) changes, a difficult (unusually shaped) airway, scoliosis and decreased stature. Five years ago, Roy underwent a spinal fusion from his mid-thoracic spine to his hips. This helped provide more room for his lungs to expand and slowed the progression of his scoliosis. However, the last several years Roy has continued to experience growth and an increased spinal curve above his spinal fusion. As a result, Roy has been having more difficulties with his lung function and a decreased ability to keep his oxygen levels in a safe zone at night. About six weeks ago this became so severe that Roy stopped breathing during the night and had to be placed on a vent.

Since then, he has been in the pediatric ICU at Scottish Rite hospital in Atlanta. While on the vent, his doctors decided to go ahead and expand his spinal fusion to the base of his neck. This surgery was successful. His medical team hoped that this would prevent him from needing to have a trach long-term and allow him to have enough lung function to breathe independently during the day and use a BiPAP at night.

Despite several medical trials in the pediatric ICU with the BiPAP, Roy has not been able to maintain his breathing sufficiently at night with the BiPAP. For this reason, he will have a tracheostomy surgery very soon and will need to use the ventilator at night to breathe. This requires intensive training for his mother as well as other caretakers. Roy has approximately another month in the hospital with mom learning to care for his new respiratory needs. She then will have another month out of work when he comes home from the hospital before any nursing services are available. Zait is hopeful that by the end of August he will have personal nursing services that can assist in his care.

Please help us raise money to help Roy and his family with their expenses. 

Thank you !