September is Sickle Cell Awareness Month

SEPTEMBER is SICKLE CELL AWARENESS MONTH
We sent the following letter to Montel Williams, Oprah, and Tyra Banks at the request of our yahoo sickle cell support group. Anyone interested in writing to their shows to help get out awareness for sickle cell disease are invited to write letters to them as well.

The addresses are:
Tyra Banks Show
CBS Television City
7800 Beverly Blvd
Los Angeles, CA 90036

The Montel Williams Show
433 West 53rd St
New York, NY 10019

The Oprah Winfrey Show
Harpo Productions, Inc.
1058 W. Washington Blvd
Chicago, IL 60607

The Letter we sent:
Dear Ms. Winfrey (Mr. Williams; Ms. Banks),
SEPTEMBER is SICKLE CELL AWARENESS MONTH
Please consider doing a story about the cure for Sickle Cell anemia. There has not been enough education of the public concerning this devastating disease and the cure. Please consider making this a priority for scheduling on your show.
Our 4-year-old daughter, Colleen, had a bone marrow transplant (BMT) to cure her sickle cell SS disease on September 2, 2005 at the age of 3 1/2. Colleen is now twelve months post BMT and she is doing great. While it hasn't been a completely smooth sail, she is cured.
The media has picked up a few stories, such as the Mallory Family. http://www.timesdispatch.com/servlet/Satellite?pagename=Common%2FMGArticle%2FPrintVersion&c=MGArticle&cid=1149189672440&image=timesdispatch80x60.gif&oasDN=timesdispatch.com&oasPN=%21health%21healthology Similar to Denise Mallory's family, we were also in touch with Oakland Children's Hospital in California to save our youngest daughter's cord blood. Not an easy feat, considering that Colleen is adopted, but that's another story (foster care/adoption). It is a wonderful thing that they are doing at Oakland Children's hospital for families. Ultimately our baby daughter was not a match, but our two son's WERE!
Our youngest son William, was Colleen's donor and he was only four years old at the time. Dr. John Levine at C.S. Mott Hospital (University of Michigan) was able to collect more than enough bone marrow stem cells and able to store the extra bone marrow. We hope that some day William's "extra" marrow can help another child.
FACTS: Sickle cell disease is an inherited blood disorder that affects red blood cells. The disease affects 70,000 Americans, mostly African-Americans and Hispanics, and some of Chinese, Arab, Greek, Indian and Italian heritage. Globally, 250,000 babies are born each year with the disease. People with sickle cell disease have an abnormal type of hemoglobin that sometimes causes the red blood cells to become sickle (crescent) shaped and these cells have difficulty passing through small blood vessels. The disease causes severe anemia and blocks blood flow and oxygen from being carried to the tissues and organs of the body. This leads to many complications such as severe episodes of pain, strokes, gallstones, organ failure, chronic skin ulcers, pneumonia, and other life threatening illnesses.
Thank you in advance for getting the word out about the CURE for sickle cell disease. Our daughter's BMT journey is available at: http://colleenbmt.blogspot.com/
Sincerely,
(end of letter)

Let us know if you write and if you get any response!

CURED

Colleen is CURED! Today's pronouncement is she does not have sickle cell disease. Her heart looks great. Her blood work is fine. Her urine is normal. She also got five immunizations today, so her legs are a bit sore.
The only downside is she got an ear infection this weekend, so she is having her first "NORMAL CHILD" illness. In the past something so minor could have put her in the hospital. She just couldn't sleep Saturday night and complained about her ear, but Tylenol did the trick. Sure enough today the infection was confirmed, no drama and not enough to put off the immunizations any longer.
Praise God that Colleen can be called a regular kid!

ONE YEAR LATER

Please celebrate with us! Today is the ONE YEAR anniversary of Colleen's BONE MARROW TRANSPLANT to cure her sickle cell anemia hemaglobin SS disease. Colleen saw her pediatrician Thursday for her long defered 4 year old well "baby" check-up. She got the "A.O.K." from Dr. Linsk. Her immunizations will begin next week at her final appointment (we pray) at the Bone Marrow Transplant Clinic. She still has a follow up with the GI doctor in October, but has been doing great so we anticipate her graduation from his care as well. PRAISE goes to the LORD!