This is Caylum's story...

In my TOF support group is Samantha and Wayne, parents of little Caylym. As a support group we are trying to raise awareness and get support for not only Caylum but many other babies who are not as lucky as I was.

This is Caylum’s story, please read it, and by sharing it you doing your bit by help creating awareness.

Caylum Willemse, diagnosed with tracheobronchomalaciam, was born on 12 January with Tracheo-oesophageal fistula (TOF) and oesophageal atresia (OA). 

Tracheo-oesophageal fistula is an abnormal connection between the oesophagus and the trachea. 

Oesophageal atresia is when the oesophagus develops in two parts, meaning food cannot reach the stomach. If associated with TOF, fluid can leak into the lungs causing pneumonia. 

This rare birth defect meant he had to go for life saving surgery the next morning. The doctor that did the operation did an awesome job and in two weeks Caylum went home. The joy of his parents was short lived. Caylum started having what his mom calls choking spells or blue spell. On one occasion he was rushed to the hospital and had no heartbeat. He was stabalised after an hour and transferred to Clinton hospital where they did a bronchoscope and saw he had severe trachiamalacia and would have to go for surgery or next time we wouldn't be so lucky again.

Caylum went for the operation and recovered well and once again 2 weeks later was sent home. Things went well for about a week until his mom started noticing he sounds a lot worse at night after he was fed. His doctor was consulted and was assured it is normal for a TOF baby to make those sounds. 

Shortly there-after another incident happened where Caylum wasn't breathing and had no heartbeat. At hospital they managed to revive him and was put on a osculatory ventilator because he had milk in the lungs. 

Long story short the problem is the tracheamalacia, but only a few cases are to the extend that the trachea collapse from the back and they have now picked up he also has bronchomalacia. 

Dr. Russel Jennings from the Boston Children's Hospital did an operation in America, called a posterior tracheopexy, with a high success rate. Currently some local doctors are doing research on this procedure but no one is willing to perform the operation. 

In the last month he had to be resuscitated three times as his condition is getting worse. 

His parents don't have the necessary finances to take him to Boston and their prayer now is for dr. Jennings to get the necessary documentation and permission to come to the country and do the operation but also for local doctors to learn from it and more angels be saved.

His parents created this Facebook-page and YouTube channel.