Local mother on a mission to find bone marrow match for 14-year-old son

The past four years have been an emotional journey for Lupita Gutierrez and her family after they found out about a rare genetic condition affecting two of their children.

Her 14-year-old son, Rolando, has to undergo routine testing after doctors determined he is experiencing bone marrow failure.

Since getting the news, the family and their support system of friends have banded together to find a donor that could be a match for Rolando. Not finding one sooner rather than later could put the teenager as risk of developing blood cancers, including Leukemia.

Gutierrez said it all started in 2020 during a routine checkup for her now 8-year-old son, Cruz. Doctors determined he has Shwachman-Diamond Syndrome (SDS), a rare condition that causes bone marrow failure. In an effort to be proactive, the family had their other three children tested to see if in the future they could be possible bone marrow matches for Cruz. However, they ended up being told Rolando also had SDS and their sister was a carrier of the gene, so it is not recommended she become a donor for her siblings.

“Every two weeks he gets checked. Every visit we have they run labs on his and we kind of figure out where he’s at," according to Gutierrez.

In June, Gutierrez met Beth DeSelms at Sacred Heart Church in Palm Desert. The women shared stories, and after hearing about what Gutierrez and er family have been going through, DeSelms was determined to help.

“Because I have kids and I would want someone to help me. I can’t imagine what she’s been going through," according to DeSelms, who joined the National Marrow Donor Program 15 years ago.

DeSelms has coordinated a blood stem cell drive on August 18 from 10:30am-4:00pm and 8:00 pm-8:30pm at Sacred Heart Church located at 43775 Deep Canyon Rd. in Palm Desert.

Anyone between the ages of 18-40 is encouraged to stop by and take a quick cheek swab test to determine whether they are a match for blood stem cells or bone marrow. Anyone who is not between that age range is urged to share the information with friends or family who might be.

The family believes it can mean the difference between life and death not only for Rolando and possibly down the road his younger brother Cruz, but for the 12,000 others on a list waiting for a bone marrow transplant. 

If you would like to get swabbed, but cannot attend the event in person, text 'SWABFORROLANDO' to 61474 to get a test kit sent to you.

The family has also set up a Facebook page and are using the hashtag #raisinghope to connect with anyone who wants to help share their story or look into becoming a possible donor.