Megaman VS Marathon Begins May 10th ![]()
This is Josh, Matt's younger brother. Josh is 19 and although he has special needs, he lives just like any other 19 year old kid would live. Josh goes to school, loves to play video games, and cheer on his favorite sports teams on a regular basis. But Josh has something that most other kids don't have. He has a very rare disease called Dyskeratosis Congenita.
Dyskeratosis Congenita is an extremely rare, genetically inherited multi-symptom disorder (it is estimated to occur in one out of one million people worldwide). It can be characterized by a variety of symptoms including skin abnormalities, abnormal nail growth, lesions in the mucous membranes (such a leukoplakia in the mouth: white patches of potentially precancerous tissue), and in approximately 90% of the cases, progressive bone marrow failure.
Josh is anemic. He doesn't produce enough blood and also has a tough time fighting off infection. He also has a low platelet count which means that if he were to get hurt and bleed, his blood would not be able to clot easily. Josh has high amounts of iron in his body that needs to be removed every night. When he sleeps, a pump that his hooked to his stomach releases a liquid into his body that forces the iron out of his system.
While there are many symptoms, the worst is the bone marrow failure. Bone marrow failure is a life threatening symptom that causes the body to stop producing Red Blood Cells, White Blood Cells, and Platelets. Because Dyskeratosis Congenita is such a rare disease, many doctors are not knowledgeable about it and often times misdiagnose the disease. It is not uncommon for a patient to pass away due to the doctor misdiagnosing this series disease. They need proper treatment in order to survive.
DC Outreach is commited to spreading awareness of Dyskeratosis Congenita throughout the world. DC Outreach's mission is to "provide information and support services to families affected by Dyskeratosis Congenita worldwide, to encourage the medical community's research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers."
In the past, TSR has helped DC Outreach provide funds to families who need them to meet with other families and doctors at a camp called Camp Sunshine. People who have Dyskeratosis Congenita could meet with other people afflicted with the rare disease and talk to knowledgable doctors about their conditions. It was a great bonding and great learning experience for everyone who attented and TSR is proud to have contributed to that. Your donations could change a life forever.
Thankfully, Matt and Josh's family does not require the financial assistance that DC Outreach provides. Your donations go straight to DC Outreach. We do not handle the money in any way. These funds are used to help those who are less fortunate so please give generously.
For more information on Dyskeratosis Congenita and DC Outreach, head over to http://www.dcoutreach.com.