Breathe for Deakon

This is my son Deakon. He is 5yrs old. In feb last year he suddenly lost his voice. With only a whisper and his breathing deteriorating we finally found an ENT who took us seriously. In oct he underwent a procedure that was meant to take 30mins to see what was going on, it ended up turning into an emergency surgery to unblock his windpipe and clear tumors from his voice box and vocal cords. This has left severe scarring already, which will likely mean he will not regain volume in his voice. He was diagnosed with a rare respiratory disease called juvenile laryngeal papillomatosis. This is a condition where wart like tumors grow in, on and around the vocal cords, voice box, wind pipe and sometimes the lungs. They also grow back, sometimes at a fast rate. Unfortunately there is no cure, there is only hope that he will go into remission around puberty.

Because they grow back, he needs continuous surgery to remove them before they get so big they block his wind pipe. This involves going from New Plymouth to waikato every two months. So far he has had three surgeries in 16weeks. We are also looking into getting him a voice amplifier buddy to help in school with class activities and reading, this will also help a lot at home when he's playing in and outside as I cannot hear him if he were to injure himself. as a single mum with 2 kids this puts a strain on me not only emotionally but financially too. I would greatly appreciate any donations towards the ongoing medical help my son needs in the future.