True was diagnosed with congenital amegakaryocytic thrombocytopenia (CAMT) when she was just six months old. Now she desperately needs a bone marrow transplant to survive. Her mother, Anessa Haden, is searching in every way that she can, but True is multiracial and there is a severe lack of minority donors. This makes the search that much harder.
True’s Story
True suffered a fall from the couch when she six months old, prompting her family to take her to the hospital. She was diagnosed and treated for a brain bleed, and then the doctors noticed something unusual: her platelet count was extremely low.
Immediately, they ordered platelet transfusions twice a week. Over the course of her treatment, she was officially diagnosed with CAMT, a rare blood disorder characterized by dysfunctional bone marrow. The Haden family was terrified, and this fear only increased when doctors said that True needed a bone marrow transplant by age three.
She was placed on the emergency transplant list but was unsuccessful in finding a donor. This is at least partly due to the extremely low number of donors that represent ethnic minorities. As True is Indian, Black, Caucasian, and Puerto Rican, it is much more unlikely that she will find a match with a Caucasian donor.
Searching for a Donor
After the hospital’s efforts failed, Anessa took up the search and contacted a number of bone marrow donation organizations, one of which was DKMS. This nonprofit’s aim is to end blood cancer, and one of the ways in which they intend to do so is by matching donors to patients. If you are in good health and between the ages of 18 and 55, you can register on their website and receive a free kit to see if you could save someone’s life with a bone marrow donation.
DKMS shared True’s story, and nearly 600 people registered their samples as a result. Additionally, the community has shown up to support True and the Haden family. Last week, they hosted an in-person bone marrow drive at The Rock Family Worship Center in Huntsville, Alabama.
While True waits for the right donor, she is undergoing preventative care and maintaining a positive attitude. Her mother describes her as resilient and playful, and she lists singing and dancing as two of True’s favorite things. Hopefully, she will receive her bone marrow transplant soon.
About CAMT
Congenital amegakaryocytic thrombocytopenia (CAMT) is a rare blood disorder that occurs when the bone marrow’s blood-producing cells malfunction, making affected individuals unable to produce platelets. As time passes, red and white blood cells may stop being created as well. This leads to symptoms like life-threatening bleeds and bruises, as well as a skin rash called petechiae. These effects are the result of a mutation in the MPL gene, which is inherited in an autosomal recessive pattern.
To diagnose this condition, doctors use a blood test to evaluate the bone marrow. Genetic testing confirms this diagnosis. In terms of treatment, doctors will prescribe regular platelet transfusions. Many cases require a bone marrow transplant as a cure.
Read True’s full story here.
