Baby with Rare Blood Disease Seeks Bone Marrow Donor: 'Whatever It Takes to Save Her,' Says Mom
Courtesy of Anessa Haden
A baby girl is fighting to survive after being diagnosed with a rare blood disease — but a bone marrow donor can save her life, her mother tells PEOPLE.
Anessa Haden says she was "shocked" to learn that her bubbly daughter True, then only 6 months old, had congenital amegakaryocytic thrombocytopenia (CAMT), a congenital blood disorder that attacks the body's bone marrow and severely affects its clotting functions.
The diagnosis came after True rolled off of the couch in her family's Huntsville, Alabama home and developed a brain bleed.
As doctors were examining True at a hospital, they noticed she had a dangerously low platelet count, and ordered her to start receiving platelet transfusions twice a week. In February, a few weeks into this treatment, one of True's doctors pulled Haden aside to let her know that the fall was not the cause of True's low platelet count — it was CAMT.
"My heart sank to the bottom of my stomach," Haden, 29, tells PEOPLE. "I became consumed with worry."
Doctors told Haden that True would need a bone marrow transplant to survive, and that True would likely not live past the age of 3 without one.
She was immediately categorized as an "emergency transplant" case and added to the donor registry, but they failed to find a match, as True is multiracial (Black, Indian, Puerto Rican and caucasian) and ethnic minorities are underrepresented in the bone marrow donor pool.
Courtesy of Anessa Haden
Faced with a dismal prognosis, Haden, a hairstylist, decided to take matters into her own hands: she contacted several organizations that coordinate bone marrow donations, including DKMS, an international nonprofit dedicated to fighting blood cancer and blood disorders that offered to help True find a match.
The nonprofit shared True's story on its website and has convinced nearly 600 people to join the registry in search of the baby's match, Katharina Harf, the Executive Chairwoman of DKMS US, tells PEOPLE.
Anyone in good health between the ages of 18 and 55 can register on DKMS's website to receive a free registration kit. To see if they're a match, donors just need to swab the inside of their cheeks and mail their sample back to DKMS.
If volunteers are a match, they will be contacted by the company and asked to donate via one of two methods of donation, the first being peripheral blood stem cell (PBSC) donation, in which stem cells are taken using an apheresis machine, a process very similar to blood plasma collection. For a bone marrow donation, donors undergo a surgical procedure that collects marrow from their hip bone. Most donors fully recover from both procedures within two weeks, Harf says.
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As True waits to find her match, she has been receiving preventative care, which includes medications to increase her platelet count and control seizures from her brain beed. She also has a central line in her chest which is used to treat her blood.
True, who is Haden's first and only child, has remained a "playful, resilient" baby throughout the ordeal, and loves snacking on Cheerios, listening to music and dancing, the mom adds.
"No matter how many times the nurse pokes and prods her, she will only cry for a minute and then immediately go back to smiling at you and being silly," she says.
Though Haden says the past six months have been "horrific," she has found peace and strength from her faith as well as support from her local community.
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On Saturday, The Rock Family Worship Center in Huntsville is hosting an in-person bone marrow drive from 11 a.m. to 4 p.m. CST to help True find a match.
"The outpouring of love has been amazing," Haden says.
Once True is matched, she will undergo chemotherapy to build up her immune system before receiving the bone marrow transplant.
"I'm holding on to True for dear life," Haden says. "I'm willing to do whatever it takes to save her."
