Mighty Myles' Pacers

Myles was born with Central Congenital Hypoventilation Syndrome nine years ago. CCHS is an extremely rare syndrome (1200 diagnosed worldwide) with no cure. He does not breath enough when he sleeps, is sick, or is sedentary (concentrating at school, watching a movie, etc). Without mechanical ventilation, he would not live. The first few years he had a tracheostomy and was ventilated through it. When he was two, he had phrenic/diaphragmatic pacers placed. As time passed he acclimated to using the pacers to help him breath. They are smaller then a ventilator and allow him freedom to move and play when is wearing them. They also allow him the ability to go to school and after school activities without being followed around by a ventilator.  However, the pacer transmitter (box that makes it all work) has not been updated for decades until recently. They now have a modern, more efficient, safer pacer transmitter. Unfortunately due to cost, the company that orders medical supplies for Myles won't even attempt to get the transmitters for him. We were told they were too expensive for them to take on. These pacer transmitters will help to keep Myles safe and alive but we can not afford to buy them alone. As a current patient, Myles will be charged $15,000/transmitter. He care team requires two for a total of $30,000. 

If by some chance we are able to get these transmitters covered by insurance, we would use this fund to donate to the CCHS family network. This organization is working toward better treatments for CCHS, finding a cure for CCHS and support for the families living with this. They are doing remarkable work.