Diagnosed with sickle cell disorder,Aceng
Deborah was expected to grow up and lead a life of sadness but the reverse is
the case. She has today grown to become a ray of hope sickle cell survivors and
their parents through her nonprofit organization Fearless Smiles Of Hope Foundation. In
this interview with Project Inspire Africa, Deborah tells her story.
Can we meet you?
My name is Aceng Deborah, I am 23 years of age and a Ugandan by nationality.
Tell us
briefly your childhood experience.
I can say my
childhood was okay. I was diagnosed with sickle cell disorder when I was 6-months
old. My parents knowing the difficulties that will confront me in the future
gave me so much love and this has made my life better than most people expect. As
a girl, my brothers feared that I would grow up to always fight them but
fortunately for all of us, the love in the family binds us very strongly.
What’s your
educational background?
I had my nursery
and primary education from Joy Nursery and Primary School. I then joined
Makerere College School for my O’level
before proceeding to Mengo Senior School for my A’level. In 2018, I got
admitted into Makerere University where I pursued a bachelor’s degree in
Development Economics and currently awaiting graduation.
What are
your contributions towards making your country a better place?
Not everyone
child born with sickle cell disorder is treated the way my parents did. This is why I started a not-for-profit
organization known as Fearless Smiles Of Hope Foundation. Through Fearless
Smiles Of Hope Foundation, we are spreading awareness about sickle cells
disease in rural communities of Uganda. We are also skilling those living with
the disease with life and social skills to enable them become economically
empowered. Through the work we do, we are breaking the biases surrounding
sickle cell disorder.
What steps
did you take to bring your vision to fruition?
As I grew
older, I observed that most awareness campaigns on sickle cell disorder were
concentrated in urban areas leaving rural areas in the dark. It was when I saw
this gap that I began carrying out awareness campaigns in rural communities.
What have been your achievements?
Our work has
revolved around awareness creation in rural communities. We have organized an
outreach to Lira Children’s Hospital Sickle Cell Ward where we were able to
interact with children living with sickle cell disease, their parents and
health workers there. Over 50 beneficiaries benefited from this outreach. In the
communities we work,we have been to establish volunteer networks so that the
communities can own the projects we bring. We have also organized a blood
donation drive in Makerere University. At the drive, we were able to offer free
sickle cell screening and counseling services. We had 80 persons who donated
blood and 90 persons who were screened.
What motivated you to do what you are doing?
Being born with sickle cell disease has been my number one
reason but in general, I can say, my desire to see change in the way people
living with sickle cell disease are treated in society is what makes me do what
I do.
What has
been your major challenge since you began your nonprofit?
Funding has
so far been our greatest huddle just like any other non-profit but we continue
to do our best as we are enabled.
How have you been able to raise money to
implement your ideas?
Well my organization works in teams. When we
want to implement an activity we first of all look for partners who contribute
half of the budget. The rest of the money is raised by us the team members.
Could you
share with us one or two experience(s) you have had in the course of your
campaign that has impacted on you?
Hmm…. Although I knew it was
important that people get to know the truth about sickle cell but I was yet to
see the true and real impact of what we were until the day I went for my
regular checkup at the sickle cell clinic some time ago. At the clinic, I met
this mother whose baby has been diagnosed with the disorder. I shared with her
my journey as a young adult living with the disorder. My mum who was with me
also shared with her her experience in parenting a child living with sickle
cell disorder. A few days later the lady called me thanking me for the
conversation we had with her. She confided in me that at the time we met,she
had already been pressurized to abandon her baby and was ready to do so because
her in-laws had made her believe that her child was bewitched or cursed. As I listened
to her speak over the phone, it dawned on me at that moment that my work had
meaning and is really impacting lives.
What are your prospects in the next 5 or 10
years?
I look
forward to a time where we can own our own sickle cell clinic together with a
vocational center.
What do you
think is the major cause of unemployment in Africa, and how can we get over
this?
I blame 2
parties. On one hand, some youths are lazy. They fold their hands, do nothing
but blame government for not for not creating for them jobs. On the other hand,
the corruption in our leadership has designed every opportunity of growth. Every
one of us, both the leaders and the led must take responsibility for our lives
and do better.
If you had an opportunity to speak to presidents in Africa,
what would be your message.
My message would be “Give priority to your people; to their
needs, dreams,aspirations,and challenges . African leaders must learn to prioritize
their people over selfish interest.
Thank
you for sharing your story with us. Keep being strong
It is
my pleasure!
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