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TV Program about Evan Airs Tuesday night, August 19, 2008The ABC Prime Time Medical Mysteries program that was filmed last year on Evan's Chronic Granulomatous Disease diagnosis airs on Tuesday night, August 19, 2008.
It was scheduled to air twice in the past but was pulled at the last minute. Here is the link with more information: http://abcnews.go.com/Health/MedicalMysteries/Story?id=3679048&page=1. Check your local listings if you are interested in seeing the program. For those of you in England, we plan to obtain a copy and mail it as soon as we can.
Keith and I put a lot of thought into our decision to tell Evan's story on national television; we wanted to say thank you to the Hope Hospital medical staff members who saved Evan's life and wanted to bring more awareness to the general public about this rare disease, CGD. From what we are told, CGD is a less-complicated genetic mutation and if scientists can correct the mutation for CGD, they will have a good start on using gene therapy to correct many other genetic disorders. We are hoping that our participation in this show will generate awareness of CGD as well as funding for research.
Evan has an appointment at the National Institutes of Health in Maryland in September. We are looking forward to meeting the doctors there and learning more about treatment options. Keep us in your thoughts and prayers.
Keith and Teresa McClow
Submitted by Teresa M on Mon, 2008-08-18 13:31. Teresa M's blog | login or register to post comments
 I knew it was going to be on and I missed the show. I did read on ABC's website a 3 page summary. I'm glad to hear Evan is doing better now. Is there anywhere on line to view the show?? I would like to see it. Karen I was flipping through tv channels last night and caught Evans story on ABC Medical Mysteries. The symptoms were so familiar, identical to my 3 year old grandson, Dylan's illness. Dylan was diagnosed with pneumonia that was not getting better, he had several CT scans, a bronchial wash and finally, a surgical lung biopsy. He was so sick, the doctors did not expect him to make it through one more night. The diagnoses took 5 weeks, as the teaching hospital in Pennsylvania had never seen this disease. Dylan has been on daily Bactrim and Sporanox for a year, and is doing great! I am so glad that Evan is going to NIH. I have been in touch with Effie Nomicos, the director of the CGD study - she has been so incredibly helpfull in answering questions and giving suggestions to Dylan's parents. Evan, his family, and all the other CGD diagnosed children and their families are in my prayers. When they told us about Evan's CGD they had to find a conference room in the hospital because there were many doctors, nurses and event the hospital social worker wanted to learn more. Only one of the doctors had dealt with CGD before. It took 21 days for the doctors to make Evan's diagnoses and another month for him to get off the ventilator. He is doing well now. |
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I saw Medical Mysteries and hope the public learned a little about CGD. You had a good point in stating that if researchers can find a cure for CGD, perhaps the technique will help other disorders as well.
I hope that you have a great and informative trip to NIH. We've been going there for 30 years so if you need any information to help with your trip please e-mail me cgda@socal.rr.com We have two adult sons with CGD, ages 27 & 31.
Mary Hurley