YARMOUTH — Two brothers diagnosed with a fatal genetic disorder hope a bone marrow drive may save their lives, or the lives of others.
Brad and Garrett Martin both have dyskeratosis congenita, or DC, a rare disorder that disrupts the ability of bone marrow to produce new blood cells.
Their family is hosting a bone marrow drive from 10 a.m.-4 p.m. Saturday, June 22, at the Yarmouth Fire Station, 178 North Road.
There is no cure for DC, but a bone marrow transplant can alleviate the condition, which often leads to leukemia, pulmonary fibrosis and complete bone marrow failure, according to the National Institutes of Health.
Donna Martin said her sons are both working and living independently, but the life expectancy for someone with DC is not much past 30.
Brad Martin is now 32 and in complete bone marrow failure. Garrett Martin is 29. Donna Martin said DC is so rare only 500 people have been diagnosed worldwide, and men account for about 75% of the DC population.
She said the impact on her family has been profound.
“As parents of adult children with a fatal disease, you make different choices. You try to squeeze 90 years of living into 30,” Martin said. “As for our sons, they have had to face their mortality at an age that no young person should have to.”
Brad and Garrett Martin both graduated from Yarmouth High School. Brad in 2005 and Garrett in 2009. Brad was first diagnosed with bone marrow failure in 2006, when doctors initially told Garrett he didn’t have the disorder, but that changed four years ago.
She said it took seven years for Brad to be fully diagnosed; doctors simply couldn’t figure out what was wrong. Martin said it was only after a trip to the Dana Farber Cancer Institute in Boston that his condition was finally identified.
He had “a myriad of odd symptoms that didn’t add up,” she said, and doctors first thought he had some type of autoimmune disease.
She said the test for bone marrow compatibility is simple and quick and only involves a cheek swab.
“We hope that people will come out and show their support for these local men and to also provide hope to the many patients around the world who are looking for a perfect match,” Martin said this week.
She said it’s the family’s first bone marrow drive, and, while it’s unlikely, the hope is to find a match for both of her sons.
“If a transplant were to be successful it could potentially extend their lives,” Martin said.
She said typically the patients who hold such an event don’t directly benefit from a bone marrow drive, “but there’s always the hope that they will.”
In addition, she said, “both Brad and Garrett hope to bring more attention to DC since it’s so rare that most of the medical community is unaware of it.”
Martin said people who would like to help, but can’t attend Saturday’s event, can order a bone marrow swab kit from DKMS, an international nonprofit dedicated to supporting blood cancer patients. Go online to www.dkms.org to order a kit, make a donation or for more information.
Martin said living with DC is challenging because “these patients have to be at a doctor’s office being poked and prodded all the time.”
“Patients constantly have to have bone marrow aspirations, pulmonary function tests, retina screening, intense ear, nose, and throat screening, dermatology screening and bone density screening,” she added.
And the management of all the symptoms and all of the doctors involved “is daunting and taxing.”
Kate Irish Collins can be reached at 780-9097 or kcollins@theforecaster.net. Follow Kate on Twitter: @KIrishCollins.
Yarmouth brothers Brad, left, and Garrett Martin have a genetic bone disorder that has only been diagnosed about 500 times worldwide.
Send questions/comments to the editors.
