Rare Disease Afflicting Local Resident’s Son
Jacob Smith, 26, has a rare genetic disease called Chronic Granulomatous Disease or CGD. Smith, who currently resides in Oklahoma, has local ties to the area as his father and stepmother, David and Amy Smith as well as his grandparents, Don and Carol Boyer, live in the Mentone area.
According to the Rare Disease Clinical Research Network, CGD is a rare genetic disease that affects approximately one in 250,000 people in the United States. The disease prevents white blood cells from defending the body from infections caused by bacteria and fungi. As a result of this disease, Jacob currently has the lung capacity of someone with end-stage emphysema.
Though this disorder is rare, Jacob’s older brother, Justin, also suffers from the same disease, however, it has affected him differently. Both brothers live in Broken Arrow, Okla., where Jacob is attending Northwestern Oklahoma State University as a junior accounting major.
Though Jacob is currently visiting his father and stepmother in Mentone, he will soon be undergoing a bone marrow transplant sometime in the beginning of November. This surgery will take place at the National Institute of Health. According to his family, his stay will be lengthy due to the fact he must be in relatively good condition before surgery can take place. His family said Jacob will undergo chemotherapy to “reset his body to ground zero.”
Following his surgery, Jacob’s family said he will be required to reside near the institute in order to be continually checked for progress. He will then have to live in Bethesda, Md., which is an expensive area to reside in.
In an effort to offset Jacob’s medical expenses and bills while residing in the Bethesda area, his sister Amber Martinez, of South Bend, is currently raising funds. Martinez created a giving page for her brother in an effort to raise a total of $5,000 for his surgery and his time in Bethesda. Currently, a total of $105 has been raised through donations of four donors.
“This fundraiser was created to help fund my brother’s way through what’s looking like a year long journey for a bone marrow transplant,” stated Martinez on the donation page. “He has CGD, and this could greatly improve his quality and quantity of life.”
Anyone wishing to donate may visit http://gfwd.at/19olpag. The family said all donations would be very appreciated and thanks anyone donating for their assistance.