President Obama, 

 

Cc. Jack  Kingston  (Chairman of the House Appropriations subcommittee in charge of the NIH's budget.)

 

Urgent medical crisis! 

 

Please help us with your executive power and push the United States Health and Human Services, NIH Board of Directors, Jack Kingston chairman of the House Appropriations subcommittee in charge of the NIH's budget fund my 11 year old's rare cancer department at NIH. There is a  serious situation at NIH we are in desperate need. Immediate action required.

Due to cutbacks, world recognized Doctor Pacak and his pheochromocytoma/paraganglioma protocol/department has shut down life saving treatment, research, and diagnostics. Patients appointments and treatment have been CANCELLED! Conditions/cancers related to these tumors cause high blood pressure, heart rate, potentially causing strokes and heart attacks. Among other many problems associated with them.  Of course these can be life threatening. Pheo's or Para's, for short, secrete massive amounts of adrenalin and other hormones and chemicals.

My daughter was only 10 years old with a blood pressure of 195/136 and a steady pulse of 170. Her body started to shut down. Her heart was enlarged and malfunctioning. Kidneys almost shut down, she was only 67 pounds. She had horrible headaches and vomiting And painful  bone pain, she had no muscles left, and slept all the time. Her large tumor 6cm malignant (pheochromocytoma) was eating her alive. Thank god she survived, however she has other spots we are worrying about. My daughter has a rare case and was getting genetic tests to find out what rare mutation she has so NIH can plan her treatment accordingly. As far as I know she could be part of the key to a cure. I am still awaiting the results. 

Most doctors and medical professionals do not know about this possible life threatening tumor. If not caught early coroners find in autopsy. NIH can locate these before the further damage happens. Doctor Pacak and his team save lives. He and his team Coordinator Karen Adams, and researchers give us all hope, sometimes this is the most important feeling we can have. Due to the devastating outcome of these rare tumors. However, this department was virtually chopped. Very abruptly! 

This department cannot be shut down! Patients are waiting. Our cancer is spreading. Blood pressure is rising. If a patient dies of a stoke or heart attack because of delay in treatment by Dr. Pacak's team I am sure it won't look good, just like the veterans dying waiting to be seen recently. 

Some people that count on NIH are in much worse shape than my daughter. They will die if funding isn't granted immediately. Some have multiple tumors and are in pain because it's in their bones, liver, lungs or near spine. Some of these people are counting on the cutting edge science and tests. As well as the medical expertise of Dr. Pacak'a team. As I mentioned before Delay in diagnosis and treatment has devastating outcomes. Since most medical professionals do not know what this is. Dr. Pacak is our only hope in getting proper care, establishing a plan. and prompt diagnosis. They have had to cancel life saving treatment and follow up appointments. They need funding immediately. 

There also needs to be more training for doctors, and public awareness. There are some things we cannot change in this world, but this is something we can change and need to...

Please fund NIH Pheochromocytoma and Paraganglioma Protocol. Patients are waiting.....we are counting on you.

On behalf of ALL who suffer, have lost a loved one (or many in their family) we need a cure and to keep the hope alive. 

 

Respectively, 

 

Christy Allen & My 11 year old Trinity "Braveheart"

 

 

On behalf of the thousands affected by this dangerous cancer and 

 

The International pheochromocytoma/paraganglioma support group via Facebook. 

 

 

 

https://science.nichd.nih.gov/confluence/display/pheo/Home?desktop=true