Bone marrow registry drive to honor Modesto third-grader with rare blood disorder
Jennifer Sousa doesn’t know how her 8-year-old daughter Piper developed the rare disorder that caused her body to stop producing enough of the blood cells needed to fight infection, filter toxins and properly clot, but she knows Piper likely will need a bone marrow transplant.
Sousa started noticing excessive bruising on Piper in November but at first attributed it to her active lifestyle that includes cheerleading and dancing. On Christmas Eve, however, Piper woke up with a purplish-red, flat rash on her hands caused by bleeding under the skin.
Sousa took her to urgent care and blood tests showed her white and red blood cells and platelets levels were extremely low. Further testing at a children’s hospital showed she had less than 10 percent of normal bone marrow.
Doctors ruled out leukemia but Piper was eventually diagnosed with aplastic anemia, a condition that causes the bone marrow to stop producing enough blood cells and affects only one to two people per every million people.
The Modesto third-grader’s symptoms are relatively mild, consisting mostly of bruising and occasional bleeding gums, but the disease is serious and potentially life-threatening.
But because she must go every week to UCSF children’s hospital in Oakland for blood transfusions and because her immune system is compromised, Piper can no longer cheer or dance or attend classes at Our Lady of Fatima Catholic School.
“She has been such a trooper; she really hasn’t complained that much,” Sousa said. “She is a happy girl and has a spunky, feisty personality.”
Doctors have said Piper’s best treatment option is a bone marrow transplant and her mostly likely donor match is her 6-year-old brother Hudson. The family is awaiting results from a blood test to determine if Hudson is a match.
If he is not, a stranger on a bone marrow registry could be Piper’s best chance.
To encourage people to join the registry, two drives are being held locally in Piper’s honor.
“Even if Hudson is a match, let’s put some good karma out in the world and get as many people as we can on the registry,” said Sousa’s friend Sarah Rocha, who along with the registry organization Be The Match helped organize the drives.
Rocha’s neighbor Kevin Wise, who is the fire chief in Ceres, underwent a bone marrow transplant for leukemia in 2016 and has been in remission ever since. Two bone marrow registry drives were organized in his name at the time and nearly 200 people signed up.
Rocha hopes to have a similar turnout this weekend at these drives on:
- Saturday, Feb. 22, from 10 a.m. to 2 p.m. at Winton-Ireland, Strom & Green Insurance at 627 E. Canal Drive in Turlock.
- Sunday, Feb. 23, from 9 a.m. to 2 p.m. at Our Lady of Fatima School (in the cafeteria/old hall) at 501 W. Granger Ave. in Modesto.
Registering is a simple process that involves a cheek swab and about 15 minutes of paperwork. You must be 18 to 44 to register.
Once on the registry, there is a 1 in 40 chance you will be called upon for additional testing to determine if you are a good match for a person in need, but only one in 430 actually go on to donate bone marrow.
The two ways of donating are an outpatient surgical procedure in which marrow is extracted from your pelvic bone and, more commonly, a process that is much like donating blood but involves both arms, takes several hours and is preceded by several days of medication that increases the number of blood cells in your bloodstream.
This story was originally published February 21, 2020 at 5:00 AM.
