Baby afflicted by rare disease
Maria Hope Diaz will turn 1 on Thursday, but won’t be on island to celebrate the occasion with her extended family.
That’s because Maria Hope is undergoing chemotherapy at the University of California San Francisco Children’s Hospital. Maria Hope is battling a rare immune deficiency called Severe Combined Immunodeficiency, or SCID.
After completing a nine-day regimen of chemotherapy, Maria Hope is expected to undergo a bone marrow transplant Wednesday, California time. It will be her birthday, Guam time, when her family members will celebrate with a fundraiser to help raise awareness about her condition.
Shortly after Maria Hope was diagnosed, the family talked of forming a foundation to raise awareness about the affliction, said Chelsa Muna Brecht, a close relative of the family.
“None of us had even heard about SCID until it happened to us,” Brecht said. “Doctors are saying that a lot of these cases go misdiagnosed. So the primary goal of the fundraiser is to educate the community, God forbid should we ever have to see it again.”
The condition is extremely rare, occurring in 1 in 500,000 to 1 in 1,000,000 people, said Dr. Thomas Shieh, president of the GMH medical staff. Those with SCID have an absence of T cells, which results in B cells not functioning as well, he said.
“These are the cells within our bone marrow that produces antibodies to fight off diseases,” Shieh said.
It’s commonly referred to as “bubble boy syndrome”, popularized by the 1976 made-for-TV movie, “The Boy in the Plastic Bubble,” starring John Travolta.
Patients before had to live in a germ-free environment using plastic bubbles and suits, Shieh said. Advances in medicine, he said, have allowed doctors to know what SCID is and how to effectively treat the disease.
“The fact is this, it is very rare, and Guam probably would not see another case base on the statistic incidence,” Shieh said.
Felicita Pablo Diaz, Maria Hope’s mother, said her baby was born without complications on Dec. 7 of last year.
Maria Hope developed a cold and mild cough when she was four months old, from which she had difficulty recovering. Weeks later, Maria Hope developed more illnesses, before she was finally admitted to Guam Memorial Hospital.
Her condition worsened when she developed a case of pneumonia that she could barely fight, Diaz said.
The baby had to be flown to St. Luke’s Medical Center in the Philippines for additional treatment and further testing, Diaz said.
By June 30, tests concluded that Maria Hope had SCID. During the next few months, she remained at the hospital, building her strength for the transfer to the San Francisco facility for further treatment.
Since the second week of November, Maria Hope has been at the children’s hospital awaiting the needed bone marrow transplant she will receive from her mother.
“Mommy was the initial choice as the donor,” Diaz said.
Stem cells that produce blood and antibodies are located in bone marrow, Shieh said.
“By replacing the entire bone marrow, we hope that the body takes over this ‘new marrow’ and begins to function normally,” Shieh said.
To help offset her treatment costs, Maria Hope’s family initially held fundraisers, including a golf tournament, car washes and exclusive movie reservations at the Micronesia Mall Theaters, Brecht said.
“We didn’t want to ask people to give us money without having something (for them) to take away,” Brecht said.
Diaz hasn’t dismissed the efforts of those closest to her family in their support to help Maria Hope receive the treatment she needs.
“Our families, friends, co-workers and business associates have assisted us in one way or another,” Diaz said. “Through their love, support, and most importantly their prayers, Maria has made it to San Francisco.”