Thursday June 15, 2006

I recently received this email / letter concerning my nephew, Tommy please read this in it's entirety:

Hey everybody. About a month ago, we found out Tommy has what's called Addison's Disease. It basically means his adrenal glands don't work to help regulate all of his electrolytes.

Well, The docs put him on medicine to correct the problem and it's helping. But now we have a bigger problem. They found out what destroyed his adrenal glands to begin with. Pulling no punches, it's bad. He has what's called adrenaluekodystrophy. Basically, his body can't get rid of saturated fats and what they call long chain fatty acids. These fats in turn attack his brain and destroy it.

Without any treatment, he has at most 2 years. With treatment it's unsure. The ONLY treatment is a special oil called Lorenzo's Oil to slow down how fast it destroys his brain and a bone marrow transplant or cord blood transplant. Even the transplant has a 40% mortality rate because he will have to have chemotheraphy to destroy all of his immune system to kill the bad stuff. If he survives that, there is a chance of rejection. If the transplant takes, studies on 12 kids with this disease show 1 that reversed the damage, 8 had no change at all for the good or bad and the other three actually died faster because the disease sped up.

We need all of your love, loads and loads of prayers and to stand in faith for total healing and we need volunteers to be tested as possible donors. This can be done at a local Red Cross I am told.

They said have the Red Cross or your physician fax the results to Dr. Jennifer Miller at Shands Pediatric Hospital in Gainesville, Florida. The fax is at the end of this letter. All that the testing involves is a little blood test and if by God's grace you're a match, they will numb your hip area, insert a needle, take a little marrow and you can leave within three hours. No side effects. We know it's a lot to ask but we need all of you to help and ask friends to pray and be tested. Anything you can do is more than appreciated. It may save our little boys life. Our faith is definately being tried and it's really hard. Everytime we think we get a handle on emotions they go nuts with fear. We know with your prayers we will overcome this disease and beat it.

Please add us to prayer lists at church. Any questions about anything, please email us at mdwh@yahoo.com.

The fax number for results of a bone marrow test that you graciously get tested for follows: 1-352-334-1325, Attn: Dr. Jennifer Miller. The test is called HLA for bone marrow transplant compatibility. When people we know are well it is easy to take health for granted.

The hardest part of this is that Tommy shows no symptons. To look at him he looks and acts normal. I never knew you could donate bone marrow for anyone but family. And I had no idea it was so easy. If you are willing to get tested and it turns out you are not a match for Tommy we encourage you to keep your name on the donor list so maybe someone else can be helped. We love you all and thank you for your thoughts and prayers:

Rob, Shelly, Bobby and Tommy