The health plan for individuals
AMIDA CARE is a welcoming community
that celebrates you for who you are. We see
each member as a whole person, with physical,
emotional, and social needs. You can expect:
Comprehensive health coverage
Personal champion who works with you
privately to customize your health care
Expertise in sexual health, including
HIV treatment and PrEP access
Help with housing referrals, job training,
and other support programs
Medicaid Health Plan
Call us for
1-855-GO-AMIDA (1-855-462-6432), TTY 711
BRONX TIMES R 20 EPORTER, APRIL 5-11, 2019 BTR
Asaya Bullock with his sister Anaya. Photo courtesy of The Icla da Silva Foundation
Parkchester child fi ghts
for a chance at survivial
BY ROBERT WIRSING
A Bronx child needs your help fi ghting
a rare autoimmune disease.
Since birth seven-year-old
Parkchester resident Asaya Bullock
has been diagnosed with IPEX syndrome,
a rare autoimmune disease
linked to the dysfunction of the transcription
factor FOXP3, widely considered
to be the master regulator of the
regulatory T cell lineage, since March
According to the U.S. National Library
of Medicine, IPEX syndrome
can be life threatening in early childhood.
The National Center for Advancing
Translational Sciences notes the disease
solely affects males and starts in
the fi rst six months of life.
Symptoms include severe diarrhea;
diabetes; skin conditions such as eczema,
erythroderma or psoriasis and
Asaya’s only cure is a bone marrow
transplant from a matching donor,
however fi nding the perfect match has
proven diffi cult.
Airam de Silva, The Icla da Silva
Foundation president, explained that
African Aermicans possess a highly
mixed genetic heritage and are dramatically
underrepresented on the Be
The Match registry.
Asaya’s father Vincent is African
American and his mother Charlene is
originally from Saint Vincent and the
They are searching for a donor who
shares Asaya’s same ethicity and ancestry.
According to Charlene, Asaya experiences
stomach and joint pain, eczema,
migraines lasting upwards of
three days, depression and forgetfulness
due to IPEX syndrome.
She added that when her son was
dignosed the doctors estimated that he
would only live for two years.
Charlene describes Asaya as a fun,
outgoing kidster whose hobbies include
football, basketball, video games
and writing his own stories and comic
The couple became aware of the
challenges in fi nding a match for their
son very early on and took matters
into their own hands.
Soon after Asaya’s diagnosis, Vincent
and Charlene decided to extend
The couple gave birth to their
daughter Anaya and hoped to use Anaya’s
cord blood as a potential cure for
Although Anaya’s cord blood was
a 70% match for Asaya, his body rejected
The odds are not in Asaya’s favor.
According to the Icla de Silva Foundation,
white patients have a 77%
chance of fi nding a match on the registry
while most African American patients
only have a 23% chance of fi nding
a matching donor.
The more genetically unique a patient
is, such as Asaya, the lower their
chances are in fi nding a match.
De Silva noted that the survival rate
for individuals with IPEX syndrome is
between 75 to 80%, but it varies from
patient to patient.
The only way to increase the
chances of fi nding a match is to get
more people to join the registry.
“Any person who joins the registry
could be a perfect match for Asaya,”
said de Silva.
Anyone between 18 to 44-years-old
can join the registry.
For additional information and to
add your genetics to the registry, visit