International Co-operation Stopped Nina Going Blind.
All it took was a few caring people to change a six year old’s
outlook for the better. Nina Butoyi has a rare eye condition called
Retinoblastoma. It is a cancer that grows in the Retina at the back
of the eye, mostly in children under 5.
Nina was born in Burundi, central Africa which borders Rwanda,
the Democratic Republic of Congo and Tanzania. In Burundi there
is no treatment for Retinoblastoma, which makes this disease fatal.
At the time of diagnosis, Nina was one year old and her mother
Rosalie Butoyi was working for an international charity. Her
employer assisted the mother and child to fly to Kenya and then on
to the UK for necessary treatment. Part of the treatment was to
remove Nina’s eye as the tumours were already extremely large.
In the UK, children with this rare cancer have access to treatment
in specialist centres. Treatment here is very successful with 98%
of children surviving, and the specialist consultants believe
preservation of sight is highly important.
Following the first treatment in the UK, Nina and her mother made
several trips to Nairobi for follow up examination. Five years later a
check-up revealed new tumours in Nina’s remaining eye. Acutely
aware that to remove a second eye would leave Nina blind, the
consultant recommended Radiotherapy treatment in the UK.
Rosalie was no longer working for the same employer and
therefore did not have the same access to financial support as
before. So Rosalie sought help from friends, family and colleagues
within and outside of Burundi. Luckily Nina’s mother found a few
people in the UK who were able to help and support them
throughout her Radiotherapy treatment. They also contacted two
Retinoblastoma charities who linked Rosalie to the Retinoblastoma
Service in Canada. Contribution from the Canadian Service has
made it possible for Nina and her family to have much needed
genetic testing as well.
Rosalie has been overwhelmed by people’s generosity. “I can’t
thank everyone enough, we are so blessed that people have
helped us so much. If it wasn’t for everyone’s kindness Nina
would be blind by now and I would be devastated”.
Much of the blindness faced by children all over the world as well
as the UK is preventable if detected early. Organisations like the
Childhood Eye Cancer Trusts supports families of children
diagnosed with Retinoblastoma. They are members of
international organisations such as Vision 2020 who campaign for
everyone’s right to sight worldwide. World Sight Day, which took
place on the 11th October, was a collaborative event organised by
the members of Vision 2020. The key message for the UK
highlights the importance of looking after your eyes from an early
age.
All children under the age of 16 in the UK are entitled to a free
NHS eye test, so our children can take advantage of the health
care provided in this country. Nina is extremely lucky that a few
determined people enabled her to get the treatment she needed to
keep her vision. Millions of other children in the developing world
are not so lucky.
Notes to the Editor
About Retinoblastoma
1.
Retinoblastoma (Rb) is a rare form of cancer which affects
the retina of children, predominantly under the age of 5
years.
2.
Statistically it affects 1:20,000 live births each year. This
can also be expressed as between 40 and 50 cases a year
or about one child a week. It represents 3% of childhood
cancers in the UK.
3.
Retinoblastoma affects children from all races and occurs
in both genders equally.
4.
There are many different treatments available in the UK
and 9 out of 10 (95-98%) of children diagnosed will survive
(5% will not survive). However in the developing world, it is
still fatal.
5.
In about 45% of cases, the condition is inheritable (with
55% non-inheritable). A person who has had this form of
Rb has a 50% chance of passing it on. The retinoblastoma
gene (Rb1) was the first inheritable cancer gene to be
identified.
6.
Rb can affect one (unilateral) or both eyes (bilateral) and
there can be anything from 1 tumour in 1 eye to multiple
tumours in both.
7.
There is an even more rare form of Rb called Tri-lateral
retinoblastoma which also affects the pineal gland. This
form is usually fatal.
8.
About 80% of children will have an eye removed
(enucleation) because most cases of Rb are not picked up
until the child is about two and half and the outward signs
are visible to the naked eye. 85% of unilateral Rb patients
will require enucleation and 5% of children currently have
had double enucleation (both eyes removed).
9.
The average age of children at diagnosis is 28months
(unilateral condition) and 9 months (bilateral condition)
10.
The signs of Rb are: the appearance of a whitish light
bouncing back out of the eye, like a “cats eye” caught in
the light. It is often noticed in photographs where flash
photography has been used. One eye will appear red, the
other white. (note: there can be other reasons why this
reflex occurs but it is ALWAYS best to get it checked out).
a squint is sometimes present and the eye can look sore or
swollen.
11.
Children who have the inheritable form of Rb have a higher
risk of developing other cancers later in life.
12.
There are two specialist NHS treatment centres in the UK,
The Royal London Hospital and Birmingham Children’s
Hospital. The service is overseen by the National
Specialist Commissioning Advisory Group (NSCAG) which
is part of the Department of Health.
13.
Initial diagnosis can be made by examination using an
ophthalmoscope but full diagnosis can only be confirmed
by a specialist during an examination under anaesthetic
(EUA).
14.
There are no known causes for the occurrence of this
cancer.
For more information contact:
Childhood Eye Cancer Trust
The Royal London Hospital
Whitechapel Road
London E1 1BB
020 7377 5578
07780 992921
Libby Halford
Chief Executive
libby.halford@chect.org.uk
Juliette Carter
Information Officer & Support Worker
juliette.carter@chect.org.uk
Linden Smith
Operations Manager
linden.smith@chect.org.uk