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Litchfield teen battles rare disease

January 2, 2013

Tyler Snow

LITCHFIELD - - No one ever expects to get the news that they have a rare, and very dangerous disease. Tyler Snow is just like anybody else, never thinking that sort of thing would happen to him. He was wrong.
Now the battle is on, and Tyler’s friends and family are pitching in to help by hosting a special fundraising event Wednesday, Jan. 9. The event will include a bake sale and nachos - and an opportunity to make donations - and will run from noon to 6 p.m. at the Litchfield High School new gym on main street in Litchfield.
Tyler, 19, is the son of Rod and Janelle Snow of Litchfield and brother of Tanner. He was diagnosed in October 2012 with PNH and Aplastic Anemia - very rare bone marrow failure diseases. PNH is estimated to affect 1 in 5 million people, while Aplastic Anemia afffects 1 in 2 million.
The diseases cause Tyler’s red blood cells, platelets and white blood cells to drop to dangerously low levels.
“I am always very tired and short of breath. I was enrolled in Southeast Community College in Milford, taking Electronic Systems Technology. I have had to take a leave of absence from school because of my sickness and treatment,” Tyler says.
Currently, Tyler says he does as much as he can to help his dad on the farm. He receives weekly platelet transfusions, and an occassional blood transfusion. He is currently on an immunosuppressant in the hope that it will suppress whatever is causing his body to kill the bone marrow and the bone marrow will start producing again. If this treatment fails to put the diseases in remission, Tyler will require an IV immunosuppresant - and if that fails his only option is a Bone Marrow Transplant (stem cell transplant). The only cure for these diseases is a bone marrow transplant.
These procedures come with a lot of risk to a person, from inability to fight off infections, bleeding, and graft vs host disease.
Unfortunately, Tyler’s brother is not a match for him - only 25 percent of siblings actually match. Therefore, should Tyler require a transplant, he will have to look to the donor registry for a match.
“I sincerely hope that there is a match for me,” says Tyler. “I ask that you would all consider signing up for the registry, it could save my life and another person who has similar bone marrow failure diseases or blood cancer diseases. Please support me and join the “Be The Match Registry”. I also am asking people to donate Blood and Platelets through the American Red Cross. I realize now how important it is, without someone donating blood or platelets I wouldn’t be able to survive.”
Team Be The Match is a nationwide community committed to helping patients in need of a marrow transplant by raising funds to add more potential marrow donors to Be The Match Registry.
By supporting Team Tyler, you will help raise funds for patients in need of an unrelated marrow or umbilical cord blood transplant. Together we have the potential to truly make a difference in the lives of thousands of men, women and children in need of a life-saving transplant.
Be The Match works to provide hope and deliver a second chance at life to patients by:
* Recruiting and supporting potential donors: To connect patients with donors, Be The Match manages the largest and most diverse donor registry — nearly 8 million marrow donors and nearly 100,000 cord blood units. Donors can turn to their Donor Advocacy Program for support throughout the donation process.
*Supporting patients: To help patients access treatment, Be The Match offers financial support and educational resources.
*Educating doctors: Referring physicians can turn to Be The Match for information about transplant advances, caring for transplant patients and the importance of timely referral for transplant.
*Advancing science: Be The Match's research programs have advanced the science of bone marrow and cord blood transplant, from better matching the right donor to the right patient for improving post-transplant treatment.
RESEARCH SHOWS TREATMENT WORKS
Survival rates have increased significantly over the past decade among patients with leukemia and other life-threatening diseases who received blood stem cell transplants from donors outside of their families, according to new research .
Results of the recent study – presented at the 54th Annual Meeting of the American Society of Hematology in Atlanta – showed that the one-year survival rate for all unrelated transplant patients improved 12 to 13 percent between 2000 and 2009, and a large percentage of patients maintained improvements through their three-year follow-up.
The retrospective cohort study analyzed outcomes for more than 15,000 unrelated transplant patients and was led by the National Marrow Donor Program® (NMDP) and its research arm, the Center for International Blood and Marrow Transplant Research® (CIBMTR). The significant improvements are correlated with reduced treatment-related mortality, and in certain populations, fewer disease relapses.
“Such a remarkable improvement in outcomes demonstrates that unrelated transplantation is a good option for the 70 percent of patients who need a transplant, but don’t have a suitable matching donor within their family,” said Navneet Majhail, M.D., lead author of the study and medical director at the NMDP. “This is good news for these patients, and should reassure physicians about the safety and efficacy of referring a patient for an unrelated transplantation.”
In fact, the study again confirmed that those patients who received transplants earlier in their disease fared far better than those with advanced disease, emphasizing the importance of earlier referrals by physicians.
“The data confirms that physicians working with patients who are fighting a blood cancer should consider unrelated transplantation as a standard therapy,” continued Dr. Majhail. “Multiple factors have likely contributed to this dramatic improvement in survival, including advances in HLA tissue typing, better supportive care, less intensive conditioning regimens, new medications to treat post-transplant complication and a growing, diverse registry of volunteer bone marrow donors.”
The NMDP’s Be The Match Registry® today includes more than 10 million potential bone marrow donors, compared to 3.5 million in 2000.
“The transplantation community has gained enormous knowledge over the past decade, evidenced by the significant improvements in patient survival,” said Jeffrey W. Chell, M.D., chief executive officer of the NMDP. “Unrelated blood stem cell transplantation is no longer a last resort for patients battling life-threatening blood cancers.”
Thousands of patients depend on the Be The Match Registry to find a donor who can five them the chance for a cure.
“Please support me and join the Be The Match Registry,” says Tyler.

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