October 7 - World Cerebral Palsy (CP) Day:
When motor functions are impaired
An estimated 40,000 children are diagnosed with
Cerebral Palsy in Sri Lanka:
Cerebral Palsy (CP) is the most debilitating
neurological disorder that afflict children from infancy or early
childhood, permanently affecting their body movement and muscle
coordination. In Sri Lanka, an estimated 40,000 or more children have
been diagnosed with the disease, with over 70% of them having spastic
Cerebral Palsy. However, a single Centre to provide them with the
support they need was only set up four years ago when Dr. Gopi Kitnasamy,
BSc MCSP(UK), MIMDTP(UK), Chartered Physiotherapist, Certified
Paediatric Bobath Therapist and Founder/Chairman Cerebral Palsy Lanka
Foundation (CPFL), came up with his innovative project ‘The Dream’
Centre. This Centre along with two others set up later, now caters to
all the needs of children sidelined for years because of CP, under one
Here Dr Kitnasamy talks to Sunday Observer about the disorder, how it
is caused, and reveals his dreams of making the world a better place for
all Lankan children who are afflicted by this debilitating condition.
Q: World Cerebral Palsy Day was observed early this week. What
is the significance of this day?
A: World Cerebral Palsy Day is an innovative project launched
in 2012 by Cerebral Palsy Alliance (Australia) and United Cerebral
Palsy (USA). It is supported by over 270 Cerebral Palsy service
organisations, universities, parent groups, research institutions,
student groups, schools and children’s hospitals from 46 countries. More
than an awareness day, the project aims to gather ideas from people with
Cerebral Palsy and their supporters, and make the best of those ideas a
reality. The theme is ‘Change My World in One Minute’. Cerebral Palsy
Lanka Foundation (CPLF), which represents persons with Cerebral Palsy in
Sri Lanka has been the partner of World CP Day from the launch of this
Q: So what is Cerebral Palsy and how is it caused?
A: The term ‘cerebral’ refers to the brain; palsy refers to
the loss or impairment of motor function. Cerebral Palsy is a group of
neurological disorders that appear in infancy or early childhood and
permanently affects body movement and muscle coordination. Cerebral
Palsy is caused by damage to or abnormalities inside the developing
brain that disrupt the brain’s ability to control movement and maintain
posture and balance. Cause of Cerebral Palsy is unknown in many cases,
but possible causes include genetic abnormalities, congenital brain
malformations, maternal infections or fevers, or fetal injury like brain
Q: Any other contributory factors?
A: Low birth weight and premature birth, multiple births,
infections during pregnancy, blood type incompatibility between mother
and child, exposure to toxic substances, mothers with thyroid
abnormalities, intellectual disability, excess protein in the urine, or
seizures, breech presentation, complicated labour and delivery, small
for gestational age (babies born smaller than normal), having Seizures,
low Apgar score (rating that reflects a newborn’s physical health) and
child having Jaundice a yellowing of the skin or whites of the eyes of
the newborn) are the risky conditions for Cerebral Palsy.
Q: Is it a genetic disorder as well? Can it be prevented?
A: Cerebral Palsy related to genetic abnormalities cannot be
prevented, but a few of the risk factors for congenital Cerebral Palsy
can be managed or avoided. For example, Rubella, or German measles, is
preventable if women are vaccinated against the disease before becoming
pregnant. Rh incompatibilities can also be managed early in pregnancy.
Q: What is Acquired CP?
A: Acquired Cerebral Palsy, is often due to head injury, is
often preventable using common safety tactics, such as using car seats
for infants and toddlers.
Q: Who are the most vulnerable groups?
A: Cerebral Palsy is the most common motor disability in
childhood and this is more common among boys than girls. Some 70% of the
children identified with Cerebral Palsy had spastic Cerebral Palsy. More
than 12% walked using a hand-held mobility device and more than 40% had
limited or no-walking ability. More than 40% of children with Cerebral
Palsy have intellectual disability, 35% have epilepsy, and more than 15%
have vision impairment. Therefore we should make the community aware of
this condition beforehand.”
Q: What are the implications of this disorder? Is it a
lifelong condition or can it be reversed with proper treatment?
A: Cerebral Palsy is a life-long physical disability. It is a
condition that is permanent, but not unchanging.
Q: Is there a cure? Can surgery or therapy at least reduce the
A: There is no known cure for this condition but its effects
can be greatly mitigated by the delivery of appropriate therapeutic
interventions towards such patients to help them lead an independent
Q: How many victims of this condition are there in Sri Lanka
A: Globally, more than 17 million people have Cerebral Palsy
and one out of two people with Cerebral Palsy lives in chronic pain; one
out of three cannot walk; one out of five cannot talk; one out of 10 has
a severe vision impairment and one out of 25 has a severe hearing
impairment. In Sri Lanka there is no official count as yet, but it’s
estimated that there are 40,000 or more and the numbers are high and
Q: Is it because this disorder is spreading for some reasons
or because of more detections?
A: It is not a disease and it’s not contagious. More
detections have been made due to our awareness raising programs
islandwide. The media has also helped and we are grateful for their
Q: What are the symptoms parents must look for to detect this
condition in children?
The lack of muscle coordination when performing voluntary
movements; stiff or tight muscles and exaggerated reflexes (spasticity);
weakness in one or more arm or leg; walking on the toes; variations in
muscle tone, either too stiff or too floppy; excessive drooling or
difficulties swallowing or speaking; shaking (tremor) or random
involuntary movements; delays in reaching motor skill milestones and
difficulty with precise movements such as writing or buttoning a shirt.
Q: What prompted you to set it up a place like the Dream Cenre?
A: The CPLF is a non-profit organization set up primarily to
assist persons affected by CP, and to support their families. CPLF is
the first and the only organization in Sri Lanka established
specifically for people with CP. CPLF aims on becoming a centre of
excellence, which provides world class treatment, services and programs
supporting those with CP, their carers and other stakeholders. The
foundation also aims at raising awareness, building long-term capacity
and educating the public and other stakeholder groups on CP and other
disabilities. The Dream Centre is the resource and the rehabilitation
centre of CPLF established to provide educational and therapeutic
services (Physio, Occupational and Speech therapy) for the children with
Cerebral Palsy and other associated movement disorders. There are three
centres in Colombo (Wattala, Moratuwa and Battaramulla) and the vision
of CPLF is to start at least one such centre in each district of Sri
Lanka. We had been searching for a similar school for my son and that’s
how everything happened.
Q: What kind of work do you do there? What have you achieved
so far in reaching your goals?
A: Apart from the educational and therapeutic services, we
train parents to help their children to become more independent in
performing basic functions. We also developed our information services,
to a new level when on March 8, 2012, we launched Cerebral Palsy
Information Services via Mobitel in all three languages. This was a
first of its kind of information service in the World for CP. Other
highlights include setting up two more centers at Moratuwa, on May 8,
2012 and one at Battaramulla recently. To raise islandwide awareness ,
we also organised the country’s first ever National Cerebral Palsy
Awareness week . It was organized by CPLF and camps were conducted in 6
districts from May 8 to June 2, 2012.
Q: Any publications for those who might want to know more
about the disorder?
A: On June 18, 2013, CPLF published the Sinhala and Tamil
versions of ‘You and Your Disabled Child’ book in Sri Lanka. This is a
common guidance for parents of special children. We will be publishing a
special book on Cerebral Palsy soon.
Q: Social media using mobile phones is now becoming very
popular as a means of communicating messages. Your comments?
A: CPLF created the world’s first Mobile App for Cerebral
Palsy and launched it on October 4, 2013 to create more awareness about
Q: What is the most recent innovation by way of recreation to
enable children with CP to enjoy outdoor activities like other children?
A: Last year, on September 29, we launched the First Inclusive
Park in Sri Lanka with the support of World Health Organization (WHO),
Urban Development Authority (UDA) and Colombo Municipal Council (CMC) at
the Viharamahadevi Park, Colombo. Children on wheel chairs can now enjoy
going on swings in this park using this wheelchair swing specially
designed for that purpose.
Q: Any more plans to give them mobility?
A: In February this year, we launched the 1000 Wheelchairs
Project in collaboration with Wheels for Wheels Foundation and MJF
Charitable Foundation. The funds for these special Paediatric
wheelchairs were fundraised by the Around the Pearl project. These
wheelchairs were distributed to the children with CP and other
disabilities in 10 districts of Sri Lanka. Our goal is to help all the
children in need of these wheelchairs in every district.
Q: Your message?
A: Cerebral Palsy is the most common motor disability in
childhood and because of this community awareness raising is very
important.. Parents of children with CP should know that CPFL provides
services which will help such children to live a near normal life. For
more information they can use our website: www.cplanka.lk or www.cplanka.org