However, the Mahars are quick to point out that "all study on XP will help all people in the epidemic levels of skin cancer worldwide." The Mahars are, of course, not alone in their efforts to raise awareness and funds into a rare disease.
In Kentucky, during 2003, Kara and Dan Heck received the devastating news that their 3-year-old daughter Malia had a rare spinal cord tumor. The condition, called intramedullary astrocytoma, was so rare that the Hecks had to go to Baltimore to find a doctor to treat the condition. A surgery that removed most of the tumor was performed on Malia. Today, Malia is leading a healthy, active life. However, the tumor could return, as there are small amounts of it remaining in her spinal cord. The Hecks consider it a race against time to find a cure, not just for their daughter, but also for other sufferers of this disease.
In 2004 they founded the Cord Foundation, which hopes to raise awareness of spinal cord tumors and support medical research for a cure. Cord stands for Cure for Others through Research and Development. Currently, research in treating spinal cord tumors is being conducted by Dr. George Jallo at Baltimore's Johns Hopkins Hospital.
The Cord Foundation seeks to raise money to support that research. The Heck family believes research into spinal cord tumors also will benefit the treatment of other types of tumors.
Two families nearly 800 miles apart have similar missions: to raise public awareness and support research into two rare medical conditions. It's a tough chore for both the Mahars and the Hecks. Any support for their two organizations, no matter how small, will help those afflicted with these diseases and encourage groundbreaking research to discover a cure.
Article comments
1 - Matt Paprocki
How would a parent even know if their kid had xeroderma pigmentosum? Wouldn't one exposure as an infant be disaster?