Starting with a delay
Ray was sent to interventional radiology first thing this morning only to be sent back to his room. Apparently a scheduling conflict for the anesthesiologist now has him on a 2 hour delay.
News & History
Getting ready for apheresis
Ray was admitted today at NIH to prepare for apheresis. Apheresis is the first step in preparing for gene therapy. During apheresis his own stem cells are collected and will later be treated with a vector carrying a segment of DNA which is designed to correct his immune deficiency. Apheresis […]
Article About X-SCID Gene Therapy in Boston
Newborn screening & gene therapy save baby from ‘bubble boy’ disease Levi with his Dad, Phillip, and Colton with his mom, Kala (photo by Amie Van Amberg) Happy to have given birth in January 2015 to two seemingly healthy boys, Levi and Colton, after an uneventful pregnancy, Kala Looks gave little […]
Pre-Op
Ray had to be at NIH bright and early this morning for pre-op labs and anesthesia consultation. While there he got a chest X-Ray and EKG out of the way as well. It was definitely a quiet day at NIH today as we got in and out of each department […]
So it begins
November 16th we were at NIH for additional blood work and for Ray to sign the consent for apheresis in order to prepare for the XSCID gene therapy protocol. However, this is not the first time Ray has been to NIH for apheresis. He was there in 2001 when both […]
Driving Experience X 2
What an awesome night for Ray. Ray got the pleasure of riding in and driving both a Ferrari 458 and a Tesla S in one evening. Thanks so much to Leslie and Naj Husain for so generously allowing Ray to have such a great experience! Thanks to Doug Crowe for setting it […]
Gene Therapy for XSCID
We are in the process of getting Ray ready to participate in this trial. Even though it will require that Ray receive bulsulfan (a drug often used in cancer treatments). We feel that the XSCID Gene Therapy protocol is the going to be the best way to improve not only […]
Make a Wish Recipient Becomes a Wish Grantor
WASHINGTON (WUSA9) Peggy Fox, WUSA – How great would it be to grant wishes for sick children? Of course, that’s what Make A Wish Foundation does. The people who decide to grant the wishes are not Genies, but volunteers called Wish-Grantors. But a new Wish-Grantor in Northern Virginia has an unusual […]
St. Jude Symposium and Gene Therapy
June 13th and 14th, 2016 I was lucky enough to be invited to attend a SCID Symposium at St. Jude’s Research Hospital in Memphis, TN. Heather Smith and Mickey Morgan were also there. Looking back it was quite fortunate that I was able to attend. My mindset for the trip […]