Stem Cell Cures now!

The following is a letter I wrote to Congress in 2005. It had been less than two years since The Horror (psoriatic arthritis) first started in my son. In the letter I refer to a Korean researcher who has now been discredited. But others here in California are currently in the process of creating stem cell lines with the original genes replaced with genes from people with genetic conditions like my son. These cells will allow for the testing of new drugs OUTSIDE the body. It will be much safer. Thousands of drugs can be tested every week. Current techniques for testing drugs can take decades or centuries. We need embryonic stem cell reearch NOW!!!


I have a personal reason to support stem cell research—my son.

Less than two years ago he was an athletic college senior on track to graduate cum laude from UCSD when a sore knee turned out to be the first symptom of psoriatic arthritis. Today he is withered and crippled. His muscles are gone. His walking is gone. He cannot write, type or even use a computer mouse to play games. He can barely whisper a few words as his vocal cords are also affected.

The disbelief of the diagnosis of what we knew would be a sprained knee was followed by months of horror. We kept trying to make accommodations. We would go to his apartment help him clean wash clothes etc. Then we had to bring him home. He had to apply to a nearby college he could commute to and live with us. We put up hand rails in the shower. Chair by the door so he could sit to put his shoes on. My son, the champion laser tag player, could not stand to slide on his shoes.

Then we had to get the handicapped placard. Just applying is almost an admission of defeat. Then we got him a new car he could slide into better. Then expensive adjustments to the car seat to try to get him comfortable as his spine and neck became involved. Canes everywhere in our house. Weird to have canes. Weird to see him using canes. My son who could dance run jump. Now he was constantly exhausted. But it kept getting worse no matter what we tried to do to help him the inevitable and rapid progression kept continuing.

I did not know such a horror existed. Last December he was trying to type papers for his masters program when his fingers suddenly got swollen like sausages—terribly painful sausages. My wife and I finished typing his papers. We got an extension from his professors to finish. We bought Dragon naturally speaking and added RAM to his computer so he could talk to the computer instead of typing. Within two weeks the disease hit his vocal cords. He could not use his voice to activate the dragon program. Now he can do nothing but watch TV. Even then he must constantly shift chairs and put on ice pack after ice pack because he aches so much. He can no longer go to college. His very survival is at risk.

There is nothing more we can do. Just watch him suffer and then likely die. The next lovely aspect of this horror is destruction of internal organs. Soon his lungs, heart coronary arteries will be involved and then he will suffocate to death or die of a heart attack. Given the rapid progression of the disease so far I doubt he will be alive at this time five years from now.

This horror is happening to my son who was going to be the doctor, my son who should be bringing home the girl he will marry, my son who loved life, my wonderful child who had no enemies and hundreds of friends. He was always the one who saw problems and solved them. He did not ask what chore needed to be done. He saw. He helped.

He always had quick reactions. About ten years ago he saw his three year old cousin start to climb a heavy set of drawers by pulling them out. There were others adults in the room. But my son, then 14 years old leapt from his chair and grabbed the toppling chest of drawers saving his cousin. My beautiful son who saved his cousin is now in constant horrible, unrelenting pain. He has done nothing to deserve it.

But I did. I voted the straight Republican ticket in my youth. I twice voted for Bush the elder. I used to be a Sunday School teacher (15 years). I used to tithe. I ran a Christian scouting program (3 years). I supported James Dobson, a fellow Nazarene. In those times Republicans and Christianity stood for something good. Today those, who most loudly proclaim to be holy, to be acting as God wants them to, are guilty of great evil. God gave us the knowledge of how to find cures for diseases like my son has. Yet these evil monsters will not allow it.

I never could have imagined such a horror as my son has could possible exist let alone strike him down. As you sit reading this, you do not know when a similar horror could strike you or much worse someone you love. None of my son’s grandparents had autoimmune disease. One of my them died at 88. The others are living and 86, 87 and 89 years old. We had no clue this could hit us. No one is safe from genetic time bombs.

A few years ago scientist predicted that it would take a decade or more before cell lines created using the nucleus of disease causing cells would be developed. The Koreans did it in eighteen months. So much for predictions that embryonic stem cell research would not pay off for decades.

What the Koreans have done means a nucleus from one of my son’s cells could be developed into a cell line. Medicines to stop the disease could be developed using these cells OUTSIDE a human body, outside his body. No more experiments on imperfect animal disease models that only approximate human disease. No more experimenting on humans. With this technique hundreds perhaps thousands of possible disease modifying compounds could be tested at once using lab automation and “cell chips.”

This breakthrough is a quantum leap forward. If Gore had won the election this technique would have been developed in the USA and not in the year 2005 but probably in 2001 or 2002. After all, back then, the best stem cell scientists in the world were here in the United States. Cures would already be pouring out. Ill people from throughout the world would be coming here. My son might never have had to go through twenty months of hell.

My wife and I lost a baby. She had a miscarriage between the births of our two sons. That was twenty five years ago and it still saddens me today. But if there had been a way to donate some of that child’s cells to research, we would have done it. Suppose some of that child’s cells were alive and growing in labs or growing in people and providing cures. How wonderful! Knowing some part of our lost child was alive would provide me with great comfort. Surely those IVF parents must feel the same way about their embryos in storage. How much more wonderful if some part of their frozen embryos could help someone rather than just being tossed in a trash can! (And do not give me that “embryo adoption” deception! There are not nearly enough potential parents by a million fold to ever make a dent in the number of embryos stored; besides even the most careful implantations result in the death of some twenty or thirty “adopted” embryos for each successful implantation.)

I pray that you in Congress will make the right decision. Allow federal funding to go forward. Make the decision veto proof. Bush just does not understand. He has no empathy for other people’s suffering. He is wrong. He is horribly wrong. His position is simply evil. Come see my son. Send me your email address I will forward you before and after pictures of my son. See how truly evil the results of the Bush ban really are.

Sincerely darwindad