Seminar on Disability at the Nairobi Baptist Church

Report by Namatsi Lukoye

The Nairobi Baptist church held a seminar for parents entitled  'Parenting and Supporting children with Special Needs' on the 27th and the 28th of November. The event revolving around spreading awareness and proving parents with as much information on what services are currently available was attended by the Public Relations Officer and Mrs. Mwangeka (C.E.O).

Among organisations present were, the Autism Awareness Kenya, Dyslexia Organization, Therapies for Kids, Sarakasi hospital Project, among many others.

The main objective for the seminar was to create awareness, sensitize our community and empower the parents for the betterment of the children with special needs.

Avoiding and Managing Cerebral Palsy

There is no prevention for cerebral palsy but the condition can be lowered by;

·         Women should avoid under age pregnancy and stressful conditions during pregnancy

·         Expectant mothers should attend pre-natal clinics 

·         Expectant mothers should ensure that they give birth in a certified hospital or that  they are attended to by a qualified doctor or midwife

·       The condition can be managed and improved on through occupational therapy through occupational therapy

The benefits of Occupational Therapy 

CPSK therapists at the clinic

•         It offers help to people with mental health disorders and plays a key role in treating them to regain their mental abilities
•              It helps people with physical disabilities in pediatric and physical dysfunction return to ordinary tasks around home and at work by maximizing physical potential through lifestyle adaptations and possible use of assistive devices.
•          It offers training to maximize independence in activities of daily living (such as grooming, bathing, toileting, feeding and dressing).
•          The use of adaptive work and play activities increase independent function, enhance development, and prevents disability
•          Occupational therapy offers services in designing and fabrication of static and dynamic splints to prevent and correct deformities

Childhood Signs and Difficulties

A mother who succumbs to an illness or a stressful situation especially in the first three months of pregnancy is likely to give birth to a child with a developmental problem and hence follow up is important.

Be keen when the following things happen:-

Prolonged labor
Difficult deliveries
lack of or a delay cry

Signs in early childhood include:

• Early feeding difficulties 
• Delayed development 
• Poor muscle control 
• Muscle spasms 
• Lack of coordination 

Although the damage to the brain will not become worse, the effect on the body can become more obvious with age, and physical deformities can develop. Early detection and management can reduce the severity of the effects of the disability. 

The CPSK – IRA Cerebral Palsy Charity Walk/Family Fun Day

Report by Namatsi Lukoye

The CPSK – IRA Cerebral Palsy Charity Walk/Family Fun Day was fun-filled and energy packed event. The much hyped event had finally come to be on the 30^th of June 2012.  Despite the morning cold, participants including Hon Peter Kenneth, Commissioner Sammy Makove (CEO, IRA), and Mrs. Jardine Mwangeka (CEO, CPSK) had arrived at Nyayo Stadium Kuche Kuche grounds as early as 7.00am. 

CPSK families also reported early and headed straight to the set up clinics for therapy by the CPSK therapists in collaboration with Dr. Elizabeth Kruger of Nairobi hospital.

The event greatly supported by celebrities such as the Red Acapella, Fred Omondi, DJ Pinye, Daddy Owen, Mbuvi, Ng’ang’alito, Ambasada, among others; attracted approximately around 800 participants.

The 9.3 Km walk was flagged off at 8:30 after a warm up session by Mr. Waswa and the participants set off led by the Langata Brass Bad.  

As the participants made their way back to the stadium tired, they were welcomed back by the fun spearheaded by Fred Omondi, DJ Spaxx and Tangi (of Duero Agencies). Mbuvi kept the audience dancing and singing with his ‘Nikilemewa nishike mkono baba’ song.  The Vioja Mahakamani team, Sawala dancers, Bone breakers, made the fun day a success among other entertainers.

The beauty of the day shone even brighter as Daddy Owen and Dennis sang ‘Mbona,’ a song composed to fight stigma for the disabled of Kenya. This fell perfectly with the theme of the event which was, ‘Partnering to Create a Stigma Free Environment’. The Walk was aimed at creating awareness, fighting stigma and raising funds for cerebral palsy (CP) and the required occupational therapy.

Indeed we make a living by what we get, but a life by what we give. 

THE CPSK CLINIC IN DONHOLM OUR CHILDREN OUR STORIES

Diana getting her therapy

The CPSK clinic in Donholm

A child is put on a standing for around for 30mins  used in standing and midlife orientation, for strength and endurance

                                               
                                                   Parents wait for their turn with the therapist

                                                   
                  The Swing Vestibular stimulation also known as a balance center used to help a child fight fright

Roller used to train head control, rolling over and trunk strength and alignment

A letter from a dear friend

Hi guys,

My love story of children with cerebral palsy started in April 2010, while on a Jigger Campaign in Githunguri, with a team of 18 volunteers. In one of the homes, I met Steve, an 8 year old child with severe CP complications, he weighed 10kgs and was painfully breathing through a trachectomy tube in his neck. I sought the assistance of Jardine Mwangeka – the chairperson of Cerebral Palsy Society of Kenya and she visited the home with us. Unfortunately while we were seeking urgent medical intervention for Steve, he succumbed to the complications of CP.

Since then, I have come across several children with CP who are highly stigmatised and in desperate need of therapy. I would like us to support CPSK, to go beyond the borders of Nairobi. For this reason I am a friend of CPSK and have been involved in assisting them in networking and publicity. We request you to join with us by purchasing a t-shirt at Ksh1,000. I also encourage you to buy a t-shirt on behalf of a mother of a child with cerebral palsy, I have several who would like to go cannot afford a t-shirt. 

Yours faithfully

Charity Muturi

The CPSK CLINIC

CPSK boasts of provision of quality and free therapy and rehabilitation services to children/persons afflicted by cerebral palsy. The therapy and general rehabilitation clinic in Nairobi has offered hope to many families and their children especially those who cannot afford to provide these services due to financial constraints.
Therapy at the clinic happens on Mondays, Wednesdays and Fridays; children are brought as early as 8:00am for a session of 45minutes to 1hour. During this time the therapists carry out:-

• Occupational Therapy

Which aims to maximize a child's potential for independence with daily activities, it also helps a child to develop and learn many skills. Cerebral palsy can sometimes affect a child's perceptual and sensory ability and their judgment of spaces and distances. Occupational therapy seeks to help overcome this through using carefully graded activities so that they can move and use their eyes and hands more effectively to dress, eat, read, write and play with friends. It also helps children to enhance their self-esteem and sense of accomplishment.

• Physiotherapy

Uses specific handling techniques to help children to relax and mobilize their muscles and joints. It also helps a child to fight fear. This improves the child's quality of posture and movement, enabling them to move more freely and be more stable and comfortable. It is only when a child can achieve a safe and supported position that they are ready to learn to interact with their environment.

• Speech therapy and swallowing lessons

This therapy deals not only with communication and speech, but with all aspects of oral movement. Difficulties in coordinating the muscles necessary for speaking mean that children may also experience problems eating and drinking.
The Society remains a source of inspiration and hope by offering free counselling to parents/guardians towards acceptance of their children’s condition and consequently provide love and care for the child.

On Tuesdays and Thursdays, therapists visit the older children in their homes, children who cannot be carried to the clinic and give them therapy at home.

The therapists at CPSK combine these disciplines to give children with cerebral palsy the skills to explore the world, communicate their needs and participate as much as possible, not just in therapy sessions, but in all aspects of their lives.

CPSK and IRA Media Launch

Insurance Regulatory Authority Partners with Cerebral Palsy Society of Kenya to Promote Stigma Free Environment for Cerebral Palsy Victims

The Insurance Regulatory Authority (IRA) today announced a donation of Ksh 2.5 million towards this year’s Cerebral Palsy Charity Walk, becoming the event’s title sponsor.
In sponsoring the walk, the Authority is responding to a low level of awareness with regard to the condition’s effects which often lead to stigma and discrimination. The event was hosted at the IRA offices and was presided over by the Authority’s CEO, Mr. Sammy Makove.

“Our commitment to the community, either through sponsorships or social responsibility programmes is based on the desire to improve and develop our society in areas: of education and community development. We work to align the objectives of our business with that of protecting and empowering the society and the world around us,” said Mr. Makove.

Speaking at the event CPSK representative, Jardine Mwangeka, expressed appreciation for the support offered by the Insurance Regulatory Authority as well as other CPSK regular supporters: Ascribe Kenya Ltd; Lillian Foundation; and Maple Management. Mrs. Mwangeka challenged other Kenyans to come on board and support this effort.

Renowned Kenyan artiste Daddy Owen is also a supporter of the initiative. His song “Mbona” is the theme song for the walk and talks about consideration for the disabled in the society.

The CPSK and title sponsor, IRA encouraged other organisations to support the Cerebral Palsy of Kenya Annual Charity Walk and help alleviate the challenges of the sufferers of this condition as well as their families.

CEREBRAL PALSY CHARITY WALK (CPSK - IRA)

"We make a living by what we get, but we make a life by what we give" Wnston Churchill



Children's smiles have continually blessed the CPSK offices for two weeks now as a team of 32 volunteers continually dedicate their time and effort in ensuring that children affected by cerebral palsy get the therapy they need.

"We are in this together, I want to see this children living a better life, not discriminated, I want parents to feel free bring their children to the clinic any time and not fear how the society views them," said Martin (a volunteer)

The City Council of Nairobi has partnered with CPSK and IRA to ensure a stigma free environment. CCN has permitted the devoted volunteers to create awareness and raise funds on any part of the city.

Join us! Buy a T-shirt Adult 1000/-,
children T-shirts 700/-
Wristbands 200/-
Awareness Ribbons 100/-

Report on the St Peters Special School Workshop

by Job Wekesa

The workshop on early intervention and nutritional supplemental to children born with disability that was held on 20th May 2012 was very informative. The speaker, Mr. Onalo who is a special teacher emphasized on early intervention and special care given to the child at all times.

Hon. Peter Kenneth and Commissioner Sammy Makove to flag off the CPSK-IRA Cerebral Palsy walk

As preparations for the walk continue to pressure the staff and friends of CPSK, good news bring us hope. Hon. Peter Kenneth (MP for Gatanga and 2012 presidential candidate)and Commissioner Sammy Makove the commissioner for Insurance and Chief Executive Insurance Regulatory Authority have accepted to flag off the walk from Nyayo National Stadium at exactly 8am.

The family fun day designed for the cerebral palsy affected children, their siblings and other children will have loads of entertainment; from music,to comedy and to dance crews.

All we need is you to participate by buying a t-shirt at 1000 Kshs. for adults and 700 Kshs for children

Please help children like Moses among others with cerebral palsy get the much needed occupational therapy.

CPSK - IRA CEREBRAL PALSY CHARITY WALK

Join us for the Charity walk to:

:- raise awareness about cerebral palsy condition
:- to fight STIGMA!! For we are all fearfully and wonderfully made!!!
:- And to raise the much needed funds for CPSK's rehabilitation programmes

Buy one of our merchandise and give hope to a devastated family!!!

Hope is the greatest gift

Story by Caroline Njenga

Children are like flowers and little angles, beautiful little people who give the world a different meaning. Everyone yearns for a child in his/her future but no one ever thinks that this child could have a disability. What I have learn in my one month internship is that a child born with disability or a condition like Cerebral Palsy sticks closer to a parent and desires attention at all times.

Fear of rejection and stigma is the biggest problem facing parents with children with cerebral palsy. Many are times parents fear to tell the world of their children’s conditions in fear of rejection. In addition therapy for cerebral palsy affected children is extremely expensive. Cerebral Society of Kenya gives parents like this a shoulder to lean on and conducts therapy for these children at a much subsidized fee.

Being at the institution for a period of time, I have learnt a lot on how to live with these children and how to help them live a near normal life. These children attend therapy twice a week and the parents are taught how to massage them at home. This frequent therapy helps in managing the condition of the children and prevents a child from getting worse or developing a secondary deformity.

Hope is the greatest strength these parents have; hope that their babies will get better with time and more therapy. As they line up for therapy, they share their experiences and comfort one another.
Despite their work being voluntary the therapists at CPSK love their job as they love the children. “Helping a child like this one is like giving back to God,” said Augustine Sinino.

CAROLINE MILKA NJENGA

Story of Ilyne Mercy Otieno (1 year 2 months)

Parent: Susan Adhiambo
Child: Ilyne Mercy Otieno (1 year 2 months)
Type of CP: Spastic

Immediately after I gave birth to my baby girl Ilyne, she did not cry like any other normal child; she cried after 8 hours. She then was incubated for 5 days the first two being on oxygen.

At three months, my baby could not smile at me or even make any body movements. It was then that I realize that something was terribly wrong and had to see a pediatrician who later referred me to an occupational therapist.
It was devastating! I had so many questions all revolving around WHY? Why her? Why me? Why us? I was in denial for around 1 month. When I gathered enough strength I went to go see an occupational therapist who confirmed that my baby girl had spastic Cerebral Palsy. I had to get counseling to help me start taking her for therapy.

It took me a while to understand the condition and learn of all the major sacrificed that I had to do. I resigned from my job in Kisumu and relocated to Nairobi in order to Ilyne the special care and attention that she needed. I take her for therapy 5 times a week.

Therapy has made me see so many improvements, in that she can crawl using her belly, smile and even do some body movements.

I am hopeful that better days are coming and that she will become independent, and that she will run and play like other children out there.

Story by Esther Kyalo

THE CPSK - IRA CEREBRAL PALSY CHARITY WALK AND FAMILY FUN DAY

Story by Namatsi Lukoye

The Insurance Regulatory Authority (IRA), which is mandated with regulating, supervising and developing the insurance industry in Kenya ; has adopted The Cerebral Palsy Society of Kenya Charity Walk as its Corporate Social Responsibility activity for a period of three years starting with 2012. The IRA sponsorship for this event is 2.5 Million Kenyan Shillings.

CPSK which is sustained by the support of individuals and organizations of goodwill, is a charitable organization that works towards improving the welfare of children and persons afflicted by cerebral palsy in the country. Due to limited resources however, the program has been limited to Nairobi and its environs only, thereby leaving out many victims in the rest of the country.

A large number of Kenyan children are affected with Cerebral Palsy and require rehabilitation. This rehabilitation is often too expensive and out to reach for the ordinary parent; thus resulting to secondary deformities, depression and in worse cases death.

Cerebral Palsy (CP)is a developmental disability caused by brain damage before, during or after birth. This condition affects the motor part of the brain which controls a persons ability to move or control his/her muscles. Each individual however, is afflicted differently depending on the degree of damage; a child may have delayed milestones or worse it can affect every aspect of their daily life from mobility, speech to feeding.

The Charity Walk and Family Fun day which runs under the theme, "Partnering to Create a Stigma Free Environment," is an event set up to raise awareness of Cerebral Palsy condition and to fight stigma associated to it. In addition raise much needed funds for therapy. and to fight stigma associated with CP.

The 9.3 km Charity Walk and Family Fun day gives participants a chance not only to donate but also to give hope to a devastated lot. The success of this noble undertaking will; enhance an understanding of CP, facilitate expansion services nationwide thus ensuring that CP persons are rehabilitated to enable them realize their full potential.

The CPSK - IRA Charity Walk/Family Fun day is scheduled for 30th of June at the Nyayo Stadium at 8.00am.


For Further inquiries contact:

CPSK OFFICE: 0772040871, 0708829681


EMAIL: cerebralpalsysociety@gmail.com

THE CPSK - IRA CEREBRAL PALSY CHARITY WALK

PLEASE JOIN US

LAUNCH OF THE FRIENDS CLUB

Story by Namatsi Lukoye

There is still general lack of awareness about cerebral palsy and the stigma it creates to not only the family but to the community at large. The launch therefore, provided an opportunity to jointly define the condition; the hardships experienced; to celebrate friends who have been with the society and create new relationships.

Despite the heavy rains many guests had arrived by 5.30pm, the programme started on time. Two persons affected by the CP condition Anthony Ng’ang’a (25) and Brian Simiyu (16) talked about their experiences with cerebral palsy, and how despite this condition they arestriving to accomplish their dreams the audience was literally moved to tears. Ng’ang’a who is now a journalist working on a TV show that would highlight the lives of children living with Cerebral Palsy and Brian who is in form two in a regular high school had stories that only shone hope.

Anthony Ng'ang'a

"Their lives shine the flame found in ability in inabilities."

Mary Mukkanda, a parent, gave the parents side of the story of the joy and beauty they had found in sharing their lives with their little queen, Immaculate Mukkanda.

In her opening speech, Mr. Jardine Mwangeka, the Chief Executive Officer, said her vision for Kenya is “a world of love and acceptance for everyone especially those with disabilities”. She emphasized that the only way to fight stigma was to get more friends with a common goal on board to help us spread awareness. She reiterated the CPSK vision of ensuring that persons afflicted by cerebral palsy in Kenya are rehabilitated to enable them realize their full potential and how everyone in CPSK has a role to play towards achieving this vision. She went on to state the mission of the society which include; the provision of therapy; promotion of awareness and advocacy of appropriate measures to improve the welfare of persons afflicted by cerebral palsy in Kenya and the challenges the society has faced which was done by the adoption of the green ribbon for CP awareness.

Challenges highlighted for the society include: Lack of a enough funds to cover the therapy of the children, where she encouraged the friends to sponsor a child or children; lack of a transport which makes it hard for the therapists to get to children; lack of a database hence the need of a base-line survey which would help the organization to accomplish its mission.

Among achievements the launch brought was getting a friend Mr. Maurice Wambua who is interested in adopting 5 children for therapy, getting more people becoming members, raising some funds through the sale of t-shirts and wrist bands.

FRIENDS CLUB LAUNCH

By Caroline Njenga

"Its in friendship that we find pillars of hope and shoulders to lean on; where we find comfort and a reason to smile."

We will be launching our Friends Club on the 27th of April 2012 at Taifa Hall, KICC from 6.30pm to 9.30pm. This cocktail event themed, "Creating a Stigma Free Environment," is aimed at strengthening and celebrating existing relationships such as Ascribe Ltd, Tsavo Power, Habib Bank, KEBS, Liliane Foundation among others. These friends have shown love and helped us greatly in our time of need.

On this special day we shall also ignite new friendships such as the recent formed partnerships between us and companies like Zamco Holdings, Insurance Regulatory Authority, Supamamas and with individuals who have shown concern and interest in our endevours.

As we celebrate this great day, we also adopt the green awareness ribbon. Green being the colour of hope, faith and strength

How to Protect Your Child from Contracting Cerebral Palsy

By Christine Barasa

It is the hope of every expectant mother that she will give birth to a bouncing baby boy or girl devoid of any complications or disabilities. The sad reality, however, is that some mothers will have children with one handicap or the other. When this is perceived to be the works of God, it is easier to accept the truth as opposed to cases arising from human error and other avoidable circumstances. In the latter, anger, bitterness and rejection of the child are often experienced.

Most cases of cerebral palsy (C.P) – a disability caused by neurological brain damage resulting from injury, infections or lack of oxygen in the brain – can be avoided if care is observed during pregnancy, at birth and after birth. Unfortunately, in many African countries, CP is shrouded in mystery and myths alleging witchcraft and bad omens. It is this ignorance that has brought untold suffering on afflicted people and seen many locked away from the public and denied their basic human rights and dignity.

In cerebral palsy, the part of the brain that is damaged is that which controls movement and muscle co-ordination. Thus, depending on the degree of damage, a CP sufferer exhibits multiple handicaps where one may be unable to move, sit, walk, speak or carry out activities of daily living such as washing, eating or even toiletry. It comes without saying then, that they are wholly dependent and need support around the clock.

So, how can you protect your child from contracting this irreversible condition? The answer is simple: Information.

The first step is for expectant mothers to faithfully attend ante-natal clinics in order to monitor development of the foetus. Any anomalies detected can be nipped in the bud to ensure normal growth. Further, simple instructions to keep away from smoking, alcohol, drugs and non-prescription medication should be followed to the letter since intoxication from these substances damages brain cells of the baby. In addition, good quality nutrition and eating a balanced diet is a boost to the well-being of the baby.

Once the pregnancy has been carried to term successfully, the next step is to ensure safe delivery. It is advisable that the baby (whether first or subsequent ones) be born in a hospital or well equipped health centre. This should be the case, even in an otherwise trouble-free pregnancy, as it makes early intervention possible in the event of complications arising. The dangers to look out for during the birth process include prolonged labour, strangulation by the umbilical cord and breech presentation, all of which can be resolved by emergency caesarian operation. Birth asphyxia – where the baby does not cry immediately after birth – is also an indication that all is not well.

Cerebral palsy may also strike after safe delivery; so do not throw all caution to the wind yet. Infections and diseases that affect the nervous system like jaundice, meningitis, encephalitis or inflammation of the brain and hydrocephalus (excessive production of, or accumulation of cerebral-spinal fluid in the brain) among others, are key causes of postpartum CP. The secret here is early diagnosis and treatment.

Therefore, besides religiously keeping your post-natal clinic appointments, any signs of ill health in the infant should be referred to a doctor as soon as possible. Avoid self medication since time is of essence in keeping CP at bay. Also of necessity is ensuring safety of your child at home because accidents or trauma to the brain arising from bad falls could lead to CP.

In the unfortunate event that your child contracts CP from any of the causes highlighted, seek help. Denial is OK since discovering that your child has CP is, to say the least, devastating. The undoing would be to blame yourself and wallow in pity for too long. Cerebral Palsy Society of Kenya (CPSK) offers counseling and support to families of afflicted children in enabling them accept the condition of their child. The Society also provides specialized therapy and rehabilitation services, as well as training workshops on management of CP. Once again, the sooner you seek these services, the better. Success stories of children whose early intervention saw them learn to sit, walk and speak abound. Your child could achieve these milestones too.

The Simple Basics

Story by Namatsi

Here is the secret of life; love! Tuesday morning at 8.00am and it is busy as usual at the CPSK (Cerebral Palsy Society of Palsy) compound as parents bring in their children for check up and therapy. Some of these parents mostly women are coming to Donholm from as far kamulu, Nairobi west, kayole, etc with their little ones on their back!

I walk into the clinic and watch Calvin (a volunteer therapist) as he massages the cheeks of a little baby girl as her mother looks at her and playfully smiles. Each child spends around 40 minutes with the therapist and then is put on a stand for around 20 to 30 minutes. Approximately each parent spends an hour at the clinic as their children are attended to.

There around 5 therapists at CPSK, four of them who volunteer their services to help these children. These services are offered thrice a week (Monday, Wednesday and Friday) on Tuesdays and Thursday, they are offered to those children who cannot access the clinic because of their age. The services are free; what better way to live as Albert Einstein thought we should. ‘Only a life lived for others is worth living.’ I say this again, the secret of life is love.