Tyler's web site about RRP

Although looking the picture of health, Tyler, 12, has a rare, life threatening disease known as Recurrent Respiratory Papillomatosis.  The type of RRP he has is called HVP 16 and 18, which are the rarest types.  The type known as HVP 18 is the rarest with no case histories available.  

Recurrent Respiratory Papillomatosis (RRP)  

RRP is a disease of the respiratory tract caused by the Human Papilloma Virus (HPV).  It causes tumor-like lesions to grow on the larynx and, in some cases, in the trachea and lungs. They invariably cause voice difficulties, including hoarseness and vocal fatigue. They can occasionally convert into cancer. Left untreated, the lesions may grow, causing suffocation and death.  The doctors said after July's surgery that Tyler's windpipe was closed down to the size of a coffee stirrer straw.   He was literally suffocating. 

Tyler had another surgery November 5th with many, many more to come.  He is a brave, friendly and happy little boy that must deal with this terrible disease the rest of his life.

As his great aunt, I have seen how important it is to get you information about this disease.  Because it is rare, there are few stories about the crisis it presents.  The big diseases that are brought to our attention by the media, ads and marketing have made us aware of the needs of a great number of children and their families across the nation and world.  This is a disease that, like the proverbial saying, 'slips through the cracks'.  Within this web site there are numerous links for you to explore for more information.

This disease is mostly unnoticed except by those families, who must deal with its pain, suffering, fear and finance pressures.  In today’s world, as we all know, health care is very costly.  Doctors, prescriptions, labs, x-rays and hospital charges keep rising.  When an average family faces on going medical expenses their ability to maintain the typical household costs becomes daunting.  Add to the regular financial obligations, four or more surgical events in a year it becomes impossible.  If Tyler, or any child with RRP, doesn’t get the necessary surgical care they could die slowly of suffocation within a few months. 

The family is afraid of what could happen to their ability to get the surgeries Tyler needs without some financial relief.  Both parents are gainfully employed and do have insurance, but with 3 and 4 surgeries a year costing from $7,000 to $15,000 (the cost of July's surgery), their hospital and doctor bills continue to mount.  Not just mount, soar.  Having maxed out everything to have enough to meet all the rising hospital costs, they are at their wits end.  There is nowhere to go for the money that will be necessary to help Tyler.  The hospital and doctors bills continue to grow.  They are non stop and no relief in sight.  Tyler is expected to have 100 or more surgeries over the course of his life.  This family desperately needs your assistance.  

With this web site are asking for your help.  Please use this PAYPAL link to the Donate button which is located on the How to Help page.  For other methods to help email info@tylersnet.com.