PHOTOGRAPHY BY DANIEL OCHOA DE OLZA; CHANG W. LEE/
THE NEW YORK TIMES
/REDUX/HEADPRESS; INSTAGRAM/@ERICACHIDICOHEN; INSTAGRAM/@MISSMEIKS; NICOLE CLEARY; DAVID SWIFT; GETTY IMAGES.
Each year, about 8000 women in
Colombia, South America, are diagnosed
with breast cancer. Often, these cases are
diagnosed too late. That’s where Francia
Papamija (above) comes in. The
36-year-old, who has been blind since
childhood, works as a medical tactile
examiner (MTE). Using her heightened
sense of touch, she examines women’s
breasts, underarms and necks for lumps
and tumours, referring them to a doctor if
she discovers abnormalities. Research
and anecdotal evidence point to the
power of this practice. Visually impaired
women, says gynaecologist Dr Frank
Hoffmann, can detect about 30 per cent
more tissue alterations than doctors. For
Dr Luis Alberto Olave, it’s about
reframing disability. “They [the MTEs]
have this gift in their fingers. Their
[blindness] can become a talent.”COLUMBIAMAGIC
TOUCH
Lydia Williams has spent the past month in France,
diving, leaping and lunging as the goalkeeper of
Australia’s women’s soccer team, the Matildas, at
the 2019 World Cup. It’s a far cry from Katanning,
Western Australia, where she grew up with her
Indigenous father, American mother and a couple
of pet kangaroos. “I remember kicking a ball around
barefoot with the desert kids,” she remembers.
Today, she credits her childhood – often spent on
the road with her missionary parents – for her
leadership on and off the field. In 2015, Williams
fronted the Matildas’ pay strike (notably, teams at
this year’s World Cup competed for just 7.5 per cent
of the prize money of the men’s tournament).
Her urge to champion the next generation
is also reflected in her new children’s book, Saved!!!,
a semi-biographical story. “I want kids to be inspired
that they can do anything – it doesn’t matter what
their background is or how they grew up.”How did your life change when you found out
about your children’s diagnosis?
I thought being a mum would involve wonderful
days filled with the quiet confidence of being my
children’s main carer. However, I quickly realised it
involved difficult days in the hospital, confusing
conversations with doctors and uncertainty about
the future. Henry and Rosalie have difficulty
converting fat into energy, so when their energy
levels run low it can destroy their muscles —
including their heart. I must ensure that the
day-to-day care of their LCHAD deficiency is
maintained, that everyone who looks after them is
educated, and the kids know how to care for their
bodies. We fit in many medical appointments and
have to keep the kids feeling positive about them.
You’ve set up a support group around genetic
disease, as well as returning to work as
a psychologist. What drives you?
For me, it’s been about finding something that
can give me resilience and hope. It’s to show my
children they have the gift of choice in their lives;
choices that people with ‘regular’ health have.AUSTRALIALEVELLING
THE FIELD
AUSTRALIADREAMS
FOR GENES
They can experience the normal things children
their age do by learning about their disease and
how to manage it. I never want them to feel like
they’re a victim to their disease.
How has Jeans for Genes helped?
I was asked to take part in the 2018 campaign,
which showcased the amazing resilience of
children and their fight to lead long, healthy lives.
This year, Henry became one of the faces of the
campaign. The most important part of being
involved in Jeans for Genes is seeing my son
develop confidence and pride in himself, and talk
about his LCHAD deficiency. To have a child with
a rare and chronic disease can be isolating and
frightening. To know there is work going into
treatments and cures provides a platform of hope.
Jeans for Genes day is on August 2.Imagine being told your children have
a serious genetic disease, with no cure.
Jess Gowans, whose son Henry, five,
and daughter Rosalie, three, both have
a condition called LCHAD deficiency,
reveals what family life is likeJess Gowans
with her
son Henry.