For the first four years, I did not
know another human being with hemophilia or a
parent like me. I wish I had that
community and that was my motivation.
Welcome to where hope begins the Save One
Life podcast, one country, one community, and one
life at a time. I'm your host Kai.
And today, we're joined by Maureen Maruca, the
founder of the Jose Memorial Hemophilia Society of
Kenya, a leader whose story is rooted in
love, loss, and a decision to build a
community of care, advocacy, and hope for families
living with bleeding disorders in Kenya.
Welcome to the podcast, Maureen. Thank you, Kai.
Yeah. Looking forward to it. Absolutely. Let's just
start out by telling our listeners who are
hearing from you for the first time, what's
your story and who's Jose? Who was Jose
to you? Great. Maybe I'll start with the
last question,
that Jose and by the way, in Kenya,
we tend to say Jose rather than Jose,
but being in Mexico again, so that is
mixed up a bit for me anyway. So
Jose was my son who I lost to
hemophilia
when he was six years of age in
2007.
He was just shy of his sixth
birthday and just our experiences through his short
life and, and, passing on, while the motivation
for beginning,
the society at that time, I was very
clear about just letting his death not be
in vain.
So I'm
also Ethan's mother. Ethan is 18
next month. He also has hemophilia
A. I am a gender scientist
and specialist. I work for the International Center
for Maize and Wheat Research
based out of Mexico.
And then what I do, of course, with
the Hemophilia Society
is to be,
to provide that leadership and that means founder,
as you've already mentioned. Well, thank you for
sharing, and so sorry for your loss. And
I guess going back to those early days
with Jose, what was life like when you
were first trying to understand what was happening?
Yeah. So, you know, what happened one time,
actually, Jose makes his
finger, he was about,
you know, nine months of age and,
it would not stop
bleeding. And we went and saw a pediatrician.
Then I lived in upcountry in a place
in Kenya called Kisii,
which is where I was born and, brought
up. And the doctor thought that amount and
length of bleeding was rather curious. But before
that he had had a few bumps, you
know, in his body
and checking with the doctor, they were like,
maybe because that was a malaria, it is
a malaria prone area.
Maybe this is a common reaction that we
see on sulfur based drugs that we treat
malaria on. Maybe it's an allergy to eggs.
And we went through all of that. And
that's, of course, when he like, like all
children, when they start crawling at around six
or so months of age, and you see
these bruises and bumps. And then another time,
he beat himself while breastfeeding. I did breastfeeding
for a long time, and the bleeding would
not stop. And so the doctor was like,
this looks like hemophilia. You need to get
into a bus. You know, back in the
day, that was about
seven, eight hours on the road, and go
to Nairobi and try to get it diagnosed.
So, of course, we
arrived in Nairobi with blood all over. He's
still, you know,
breastfeeding. He was already so low on on
on blood and iron and got admitted into
hospital. And that's when a very difficult journey
of diagnosing the condition started because back in
the day, they did not even have the
reagents unless they were teaching the course at
the university for testing. So we had
to get samples around three times, which got
messed up,
to be sent out of the country for
testing before he was finally,
diagnosed with hemophilia.
So just looking at that first of all,
you wish that there was care close to
where we were, that we were, we did
not have to take long bus rides, which
some people still do by the way, to
go for treatment. We wish that there was
a earlier and easier
diagnosis, which to a certain extent is still
true of the situation in Kenya and, and,
and,
and, and in developing countries. And then for
the first four years, I did not know
another human being with hemophilia or a parent
like me, knowing that it was a very,
it is a very rare condition. One in
ten thousand boys. I wish I had that
community and that was my motivation
for beginning the society, just to find that
community in the first place. Yeah.
And again, the story is so familiar. The
very long bus ride to find care,
the lack of community in those early days,
with the diagnosis, and really, I guess, how
you turned grief into purpose. So I guess
tell us a little bit about how you
ended up founding,
the Jose Memorial Hemophilia Society of Kenya. What
was like the very first thing you did?
Yeah. So what I have described then became,
you know, my life in terms of living
upcountry, going into the city for treatment.
And I began to feel that something needs
to give, something needs to shift over here.
And one of the times when I had
gone to the Kenyatta National Hospital for treatment,
I met one of the doctors there introduced
me and said, there is another lady here
who also has a child with hemophilia.
There was a Kenyatta,
hospital association in which back then, which is
not the case right now, that was largely
led by medics and was trying to bring
people together. So that for me was it
was such a relief to know one initially
and then two other people who are parents
of children with, hemophilia.
We were raising similar kinds of issues. Me
and this gentleman, Obu, then became,
my partner in crime as I would call
in the society, Kehyo Chege. And we kept
raising that we need to have a parent's,
you know, view or a patient view to,
to, to this organization and how can we,
really bring those issues back. But then at
around that time, I lost my son
and there was no turning point in terms
of this has to change. So I had
that drive that, we, we needed to be
hired as
parents. We could not have lost him if
one or two, three and four things were
in place. We needed a community like this.
So in losing him, then the people that
I had already met, you know, came around
me. We went through his funeral and all
that. And after that settled out is when
I received a card, because one of the
ladies that I had met at the Kenya
International Hospital, I had already,
met with Laurie who had attempted to come
into Kenya way before,
you know, this time and tried to make
inroads but was not able to. And so
she had told her about me that I
was trying to, you know, to get hemophilia
organization started in Kenya. And so she sent
me a card to say I mean, of
course, to share her condolences about losing, my
son. And I kept that card with me
for a very long time, because then we
kept in touch and said, you know what?
There is someone like me who's making this
change around the world. When you have that
unity of purpose, then we began conversations
with
Lori. She shared her book on being a
haemophilia leader
and, and there it began. So we got
four of us parents together.
We went into
this cafeteria
of the hospital where we just died and
we began. Yeah. Thank you so much for
sharing all that. And, you know, I think
what's familiar to me is Laureen found someone
like you who wanted to make an impact.
Tell us what it's like living with a
bleeding disorder in Kenya,
and how do your organizations come together to
help those families? Yeah. So as you say,
meeting Laurie,
and then we invited her to Kenya and
she came and we would do outreach, go
out and meet hemophilia families and see what
it is, you know, day to day.
Step into government offices at the Ministry of
Health and try to bring home hemophilia up
into, the agenda of the government's priorities
and, just doing a lot of that advocacy
and awareness going out into the media, both
print and electronic,
on TV, and just talking about hemophilia and
getting people
to know about it and to sign up.
This was such a huge step of faith
because we did not even know what kind
of support are we going to offer these
people, but we're like, can we get together
fast,
you know, to get the numbers up so
that we can make a case? But then
Lori had also
founded Project Share. They were sending, medicine to
still send medicine to developing,
you know, countries. And that was one of
the initial programs we began
at, at, Save One Life in terms of
getting the medicine before we went on to
the other programs, which I think we're going
to talk about as we as we move
along. Yeah. Absolutely. How are you making a
difference in in people's lives in Kenya? And
part of that was this project, Share, that
distributes factor safely to these families. What other
what other kinds of programmings, maybe in education
or or mental health
Mhmm. Do you do you provide for families
to help support? Yeah. So after we did
the medical in terms of,
getting factor from
project share. I like to say we are,
even where we work, we are human beings
first, you know, before we are workers. So
it became quickly apparent that we needed
the support groups. For me, that was very
important for mothers to get together, for fathers
to get together, for boys with hemophilia
and siblings to get together and just have
conversations on what helped, what worked and how
do we support each other. But then it
also became apparent that these children
were not performing as well in school as
others because of absence, distances to school, bleeds,
going to school, you know, without shoes sometimes
or without transport and you
fall down and, you know, and, and long
absence, they are not doing as well. And
so we began, for those that had completed
high school or dropped out of high school
or, or just got into college, micro grants
to make sure that they were economically,
you know, empowered, that they could, earn a
livelihood and earn a living out of the
enterprise as they did. We had, I think,
I remember Simon who had,
a cow and still keeps his cows up
to now. And he was married with, children.
We had someone else who began like a
shoe,
you know, business. Another one began
a clothing, you know, sales line. Really those
kinds of things, which are not as others
as farm
labor, which is where agriculture is the biggest
employer of rural, you know, families in Kenya
and in the developing world. And so ensuring
that they got those grants, for them to,
have some almost gainful employment. And then again,
very close to me and very dear to
what I do is considering the women's empowerment
element of it because women remain the primary
caretakers. I was in formal employment. My son's
father is in formal employment, but if we
had to get admitted in hospital, it was
me as the mother,
taking absence of work and staying in the
hospital. So that burden on care, caregiving for
hemophilia, it's very disproportionate
towards,
you know, the mothers. And so we also
wanted to, get them, the micro grants, so
that they could also earn a living and
something that was easier for them to do
at home. So, you know, she can keep
in so that she's close enough to take
care of her child and earning,
you know, money as well. And then we
have very sharp children, hemophilia
children. They're very active.
They keep getting injuries, but they're also very
sharp. And so we got into the education
program in getting scholarships for those that come
from the families that can really not afford,
you know, to pay for their
education. Aside of the mothers, we also have
grants for
a few fathers that are really the breadwinners
of the family in supporting. So we have
one at the coast who's,
in into a tailoring business, ensuring that he
gets the machines and, the supplies to provide
for his family. And then finally,
the cash transfers, they say cash is king.
And it
gives dignity to families when you give them
a stipend and an allowance, you know, a
monthly one so that they can
prioritize some of those needs. You've shared so
much in terms of the impact that a
sponsorship can have.
It's beyond the medicine that's needed.
It's the travel to the care. It's
I mean, the idea that you're able to
help someone start a small business
so that they can support their family. I
think what maybe gets lost on, like, sponsors
and what it means to sponsor, especially, I
think, in a country like America, is
how far,
you know, a $20
American dollar sponsorship can go,
in another country. And,
it's just so impressive to hear that it's
not just the medicine. It's also the education,
and it's the it's the travel. It's it's
the putting put putting families in positions to
be able to support themselves.
Yes. And it's it's just really it's incredible
work. And so when you when you think
about the work you've done,
in Kenya, maybe going back all the way
to the beginning and how you're connected to
Save One Life now, what's what do you
feel is the biggest maybe difference in the
impact you've made and what gives you hope
moving forward? Yeah. So it's all of that.
It's it's just children living a normal life.
Like I lost my son, as I said,
just shy of his sixth birthday. It was
very difficult then, but one of the things
that really stuck with me that he had
a normal, a near normal life. You know,
despite that As a parent, that's what you
want for your child. It's very difficult
because you you wish you would take that
pain off your child and, and, and hold
it for themselves. And so ensuring that children
are not breathing in pain because they have
knee bleeds and all of that, they're able
to go to school and play with other
children and then go on with their education.
And that you remove a lot of that
worry and stress from their parents.
I remember one lady, sharing with me is
like, oh, oh, I can finally dress up
and turn up for the meeting. I had
to go to the hospital at night and
my neighbors were always wondering what I'm up
to, you know, leaving my place at night.
But now I can stay over here and
you can just tell that, just that
the mental health, you know, elements of that.
And then people just being, you know, being,
you don't empower people, they quite empower themselves
through the decisions they make, and they have
the agency to make those decisions because
they have the access to the, to the
financials, you know, to start up that business
and all of that. We started with boys
who are very young, who are my son's
age right now, because my son is 18
and now they are young people with families
and wives and children, and then turning up,
just seeing that, that that all human being.
I remember for some of them, you went
and first saw them, they were on crutches.
Their parents do not even understand what the
condition was. They just know that I lost
a child to this kind of a thing.
He had severe headaches and died. So then
you realize, oh, that was a head blight
that they actually had. And now they have
another son with swollen knees, you know, with
crushes and now they're intra factor. They have
got physiotherapy.
They know what is happening, they know where
they can go to help, and now they're
walking around and then they have got married.
Some of my favorite is receiving wedding invitations.
Wow. That's gotta be so fun for you.
Oh my goodness. Yes. You know? Yeah. Yeah.
Yeah.
Well, thank you so much for taking time.
I know you've been traveling so much.
And I think you're in four, maybe five
different time zones over the course of a
couple weeks when we were chatting. Yes. So
but we we made it here and and
now you're in you're in Mexico.
So tell us a little bit about the
work you're doing out of Mexico. I'm a
gender specialist.
I work right now for the CIMIT,
which is c I double m y t,
but that's the Spanish, acronym for the International
Center for Maize and Wheat Improvement. Although we
do work on other crops that are not
necessarily maize and wheat because of, all integrated
systems and the challenges that we face now
as climate change. So within CIMIT, I'm the
Director for Gender Equity, Youth and Social Inclusion,
where we are ensuring that we reach everybody
appropriately, whether they are men, women, young people,
marginalized communities, or Indigenous
peoples with the right tools and approaches.
And just like I have been saying, that
they actually benefit from this. They tell you
that we have increased incomes, improved livelihoods, better
nutrition. We can take our children, you know,
to school. But very, very important that they
have that agency and decision making, and they
can influence processes by service providers, the government,
and all of that, and even within the
households. You will not believe it, Kai, that
sometimes a woman is even considered as a
laborer in her husband's farm. She cannot make
decisions on what seeds or
what variety or what crop, you know, to
grow. So just ensuring that we look at
those gender dynamics, you know, within the household,
but most importantly that we transform systems. And
that is also very, very, very important in
the work that we do for hemophilia
in terms of ensuring that the governments include
hemophilia as one of the,
you know, the conditions
in the essential
list of diseases, the essential list of medicines.
So those systems are transformed
to, you know, to support. So that's what
I do for a living. I think what
I do at the society has influenced who
I become at my work and what I
do at my work has also influenced what
we do at the society. Yeah. It sounds
like you're very busy. As a leader, how
do you balance all that? How do you,
what makes you get up in the morning?
First, I think it is that the purpose,
being very purpose driven and it's something that
you're passionate about. It is something that life
has handed to you and that you can
do nothing about. If you truly believe in
being
the change that we want to see, yeah,
you know, around
the world
and being a key player in effecting that
change and carrying others with you as a
leader, just living that value based life and
say, I'm really for excellence and integrity in
what we do. And this is how I
want people, you know, to turn up at
work, but what might prevent people from turning
up, in that way? How do we continue
to build the next,
crop of leaders, both in the hemophilia space
in Nunezbehaviya? How do you mentor people? How
do you handhold them? Lori mentored me into
a hemophilia, wild and care and handheld me
and provided support, came to Kenya every year
and then, and then, and did all of
that. How do I pay it forward?
Yeah. Yeah. Into the next community and that,
do I hold other, how do we just
continue that, you know, virtuous
cycle and ensuring that there's, for me, it's
a whole issue of justice, like social justice.
Yeah, absolutely.
Well, thank you so much for your time
for being here today and just thank you
so much for your time. You're most welcome.
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