
Lukes AFM Nerve transfer surgery
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I took him to his Pediatrician she immediately had him go by ambulance to the hospital for a spinal tap. He was diagnosed with viral meningitis and the Doctors believed he would recover 100%.
Unfortunately instead of getting better he continued to decline. He eventually was paralyzed from the waist up. He had multiple surgeries . He had a feeding tube, a tracheotomy, blood clots on and on. We found out from the CDC he had Accute Flaccid Myelitis . It was devastating He eventually relearned to walk, talk while in PICU for 3 months.
He has had 2 years worth of physical and speech therapy. Luke came off his ventilator and had his trach removed last November. He returned to school in January. He just had surgery last month to repair the scar tissue from his tracheotomy. The final issue is he has not recovered use of his left arm. This causes many challenges and affects his quality of life.
With the recent surge in News Coverage on AFM we have seen a Doctor at Children’s Hospital Los Angeles.
He has evaluated
Luke and found him to be a candidate for a very complicated nerve surgery which would hopefully give him use of his left arm and shoulder again. This surgery would be the final chapter in his long and exhausting road to recovery.
Unfortunately our insurance does not cover this. We will be changing insurance to a PPO and will need the Maximum out of pocket to get the surgery.
Any amount would help we will be using the money to pay the out of pocket maximum and for gas and his subsequent Physical Therapy since all appointments will be in Hollywood. We would be so grateful for any support as this could be the final chapter of recovery. The surgery is in January. Anything would help. Thank you so much.
Alex & Jolene
Organizer
Jolene Kuty
Organizer
Santa Clarita, CA