WE HAVE A MATCH....PRAISE GOD!!!!!

I recieved an email which contained wonderful news on Tommy, there was a match found in cord blood. Not only a match but a PERFECT 6 out of 6 marker match!!!God doesnt do things halfway for sure. This is really an awesome thing, statistically there is only a 5% chance of even a 4 or 5 marker match, coupled with the fact that there usually isnt enough cord, but there is enough to treat a full grown MAN! (the cord blood is used the same way as the bone marrow although this initially did not seem a viable route) This news followed right on the heels of the news that Bobby and Rob were not suitable bone marrow matches! They have decided to use the specialist in Gainsville and the transplant is set for july 14th. Tommy and his mother will need to be closer to the hospital for two or three months after the transplant, so they are searching for a reasonable aparment. Bobbys test results screening for the disease have not come back yet so this is still a prayer item. There is still a great financial need so if you are moved to help them in this area please refer to my previous post for donation details. Thank you so much from all of us to those who have donated, intend to donate, and especially all those who have been praying for Tommy and the family....God Bless you all. I will continue to keep you all abreast of whats happening.

plz help if u can...

I recieved another email today there is an immediate need for funds for schooling...this is a direct paste from it "He'll also need home schooling because of the chemo and transplant which will cost $1300 before June 30th and $1700 after that date." Bobby will be screened for the disease since it is genetic. Then he will be typed for a possible match on tuesday. Pray that he is free of the disease and hes a marrow match!!! This would be the best case scenario and offer a greater chance of a cure. His catscan has been sent to Baltimore to a expert there for what they call "staging" determing at what point the progression of the disease is in...Pray it has been found early...we are believing that it has been...praise God! Rob, tommys father will also be typed for a possible match on tuesday...there is a 25 % chance of this...a marrow match from the direct family would offer a greater chance of cure or slowing the progression. Beyond those two immediate family members the possibility of a match is the same of that of a stranger. They will also be incurring expenses for traveling to Baltimore from Florida in addition to medical expenses. Anyway that you can help...would be more than greatly appreciated...and every little bit counts!!! If you would like to make a monetary donation you can send it via paypal to cakescb@iwon.com...they accept all major cards and debit or you can mail a check, money order, etc to Robert & Shelly Hopkins 403NE 140th st. Citra FL 32113 Most of all we need your prayers!!! Anyone who would like to add a link to my blogspot is more than welcome to, this will help us spread the word and increase the possiblity of contributions to at least take the financial burden from them!! I would also appreciate comments from anyone else who has been through something similar for ideas on fundraising for them!! You can email me thru the link on the right hand side of the main page under the request for bone marrow donors. Thank you all and blessings to each and every one of you. As things develop I will keep you abreast of how he is progressing......again thank you so much...and God Bless You Richly!!!

Tommy is the little boy in the middle....left to rt...my daughter jessi, Bobby (tommys brother), Tommy, Mary (his grandmother), and Shelly (his mom)

  

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