First staff house completed

The first staff house has been completed and all the fittings are in place.  The sewer and soakways have been completed and the house could be occupied if the water system was in place.  However, some local children who need therapy have been identified and preparations are underway to start giving awareness sessions to the parents as well as giving simple physio and occupational therapy to the children in question, using the completed house.

We have identified other disabled children  within the community at the request of Lillian Foundation, in order to start a partnership where they will provide Direct Child Assistance using a Link Person or Intermediator before they could embark on a Capacity Building exercise.

An invitation by the European Academy of Childhood Disability (EACD) has been extended to me to attend the 22^nd Annual Meeting of the European Academy of Childhood Disability in Brussels-Belgium from 26^th-29^th May 2010.

After the trip

Since our return, Temba has met with Linda Shephard, a representative of PEPP Incorporation from the United States of America.  They would like us to send them our profile and have expressed the desire to visit the Project Site on the next assignment to Zambia.  Temba was also featured in the Education Post of 2^nd January 2010.

A meeting with representatives from  Dulux  Zambia, Lillian Foundation  Lusaka office, as a follow up to a meeting held in the Netherlands with a representative from the Amsterdam office,  PUM-Netherlands through their Lusaka Office and U.T.H  Peadiatric Department of Excellence for a possible partnership , Hetty  Foundation-Netherlands.

We have had meetings with a representative from La Farge (the largest cement manufacturer in Zambia), they have pledged to  donate 600 bags of cement towards the construction of the mothers’ shelter and an orthopedic workshop.

Discussions for placement of a physiotherapist are still under way, we hope to conclude this issue with the Head of Department at the Healthy Ministry Headquarters.

We have also discussed with PUM and other interested parties for a possible placement of physio volunteers and we await for their response.

We had a meeting with Mr. Glen Allison and Mr. Farrow is expected to visit MYCEPA Site in June 2010.

Another expected visitor is Mr. Dafydd Hughes from Wales.  He has been a Headmaster at a Special Needs School for over 22 years and is about to retire.

Mr. David Scott will be in the country with a group twenty people, among professionals, therapists, parents, teachers and other interested parties, they arrive in chisamba on the 12^th July 2010 around midnight and leave on the 15^th July 2010.  They are bringing some special equipment for the orthopedic workshop which they hope to fit in if the building will be ready.

A program for their visit is being prepared and you will be informed of the details at a later date.

The trip – Part II, Belgium

Zambia’s Ambassador to Belgium-Mrs. Sheila Siwela at Ibis in Waterloo

We were warmly received by our host Mrs. Sybille du Park, who went out of her way to make our stay enjoyable.  We had a meeting with the Zambian Ambassador to Belgium, she too received us warmly.  Temba explained to the Ambassador about our mission to The Netherlands, after which a meeting was arranged for us to meet the members of the Zambian Mission at the Embassy.  Temba explained to them the challenges of living with disability and cerebral palsy in particular.  We briefed them on what MYCEPA have achieved to date and our dream for the future.  They promised to fund raise towards the permanent Rehabilitation Centre and thought it was a good idea especially with people like Temba in the forefront.

On 12^th November 2009 we met with the representatives of De la Croix Fondation.  They were pleased with MYCEPAs achievements to date and pledged to work with us on the next phase of the project.

Warm welcome from the Executive members of De la Croix at Mrs. Sybille Bruno’s residence

We briefed them fully on the activities which had taken place including the official launch supported by some photographs as well as the International Symposium and what was discussed in The Netherlands.

In the evening of the same day, we were invited to attend an IDAY Meeting at the Brussels  City Hall which lasted three days.  This meeting  was looking at how the European Union could address the plight of the African child’s Education, and in memory of Uegine and Kimote who died in transit while trying to deliver a letter addressed to the European Union, they stowed away in the aircraft’s undercarriage.

We met a lot of Parliamentarians including Mr. Jean Machelle, participants from different  organizations working to change the plight of the African child.  It happened that Temba was the only person in a wheelchair and he represented the disabled children well such that at the end of the meeting and at the Reception of Honors these children Temba was highly recommended by the organizers for his contributions and was given a standing ovation.

On 17^th November 2009, we visited an equestrian who gives horse riding exercises to disabled children and young adults.  This kind of therapy is not common here in Zambia, but Temba was conversant because he had gone through the same therapy while at St Giles in Harare.  The therapist was happy meet us and is willing to come to Zambia when MYCEPA is ready to see how best such methods could be introduced for the cerebral palsy children at the centre.

Finally before coming back to Zambia we went to an Institution where they offer special equipment for exercises and again Temba was useful in telling us what equipment could be needed for which kind of disability.  We managed to select and put aside a reasonable number for the cerebral palsy children in Kitwe.

On behalf of Temba and myself, may I take this opportunity to thank you all for the support given us  throughout the past year, a big thank you to Archie and Barbara for making this trip possible.

The trip – Part I, The Netherlands

An invitation came from The International Cerebral Palsy Society (ICPS), the Dutch Academy of Childhood Disability (Dutch-ACD) and the BOSK, Association of Physically Disabled Persons and their Parents – International Symposium (“A GLOBAL STATUS QUO ON CEREBRAL PALSY, WITH A VIEW TO THE FUTURE”). This came about because Mrs. Archie Hnchcliffe  intended to use one of Temba’s speech as part of her presentation but before we left Zambia,  the organizing committee put Temba on the  program  of speakers with a full slot – we just needed to get him to The Netherlands and Utrecht!

The symposium was one of the meetings where cerebral palsy was going to be represented at the highest level in the world and it was  good that the participants could hear for themselves first hand experience from a victim coming from Africa and Zambia in particular. Incidentally we were only three from the continent including another parent coming from Uganda.

MYCEPA, still in its infancy, could not  have afforded to send both of us for this symposium and obviously Temba could not travel alone.  We had to find the funds for the journey urgently if we had to make it in time for the meeting.  Barbara worked round the clock contacting friends and possible sponsors for this trip.  The answer came just two days after the first e-mail was sent.  Mr. Glen Allison.s  collegue would send US$4,000 (Four Thousand Dollars to meet our air tickets.  This was a miracle but I had one problem. Temba was in Grade XII and was due to write his Final Examination with week.  I went ahead  renewing his passport but  was unable to tell him about the impending journey.  The final decision has to come from him, as the focal person of the program. After discussing with the school authorities, there were two options – he could write some subjects and sit for the rest as an external student  2010 or he could not sit at all and come back  as fulltime student.  The second option was more attractive taking in account his disability. After analyzing the situation, I was grateful that Temba opted to travel, this would give him chance to meet cerebral palsy people from the other side he also realized that Archie will not always be there for him and it was time to get involved in cerebral palsy and make his mark on the international level, it would be good  to put  Zambia, and MYEPA  on the global map.

When it became clear Temba would travel to Utrecht for the Symposium, they gave him his own slot on the program, instead of sharing his time with Archie, he will speak as any other  participant.  Thus on 3^rd November 2009 we left for The Netherlands. Temba’s presentation was brilliant, he handled it so well including the question and answer Session.  I had to watch and listen to him like anyone else, there was nothing Archie or myself could do to help him.  I did not have to say anything during the presentation, he said it all and I also wanted him to realize what an impression he has created without help from anyone.

The chairperson commented, “Look at how confident he is, he could have chaired!” Temba turned to the audience and asked  “anymore questions?” and we all laughed.

It was a happy reunion for Temba  who saw Archie when he was very young, soon we met Jean and her husband Kennet Westmacoat who took responsibility over Temba and I had time to meet other people.

I had a chance to speak on Saturday 7^th November 2009, this was after the presentation of Mr. Godfrey Muwonge from Uganga, his organization is HOPE for Cerebral Palsy in Uganda (HOCEPA).  I just had to fill in the gaps and together we sold the plight of cerebral palsy children in Zambia and Uganda as well as the challenges of having no proper facilities and the urgent need for permanent rehabilitation centres.

Temba chatting to the lift-up crew before boarding the Kenyan Airways

Temba and I on the plane

We then received an invitation from the organizer, Mr. Johannes to attend the meeting in our capacities as a parent of cerebral palsy and Temba as a victim himself.  Actually this meeting  was  for all those who were dealing with disability and cerebral palsy in particular, care givers, doctors, researchers, physiotherapists as well as parents.  Research was finding out more and more that no matter how good therapy is if the parents are not included in the process the results are not  as good.  It has to be a partnership between all the parties involved.

Listening to the official opening of the International Cerebral Palsy Symposium in Utrecht

Temba before giving his Presentation to the International Cerebral Palsy Symposium

Temba chatting to Thor, a lecturer with CP condition and Frida, another lecturer. They are from Norway and Sweden, respectively

Recognition

These awareness initiatives brought recognition both locally and internationally.  Temba and MYCEPA was featured in the local media on the 10^th and 14^th November 2009 in The Times  of Zambia and 13^th November 2009 in the Daily Mail.  Temba  and myself were invited to attend and speak at an International Symposium “A Global Status Quo on Cerebral Palsy” in Utrecht, The Netherlands from 5^th-7^th November 2009.  We were also privileged and participated in the IDAY Conference in Belgium-Brussels from 10^th-13^th November 2009  Support on Education for an African Child, Temba was the only child and he participated highlighting the plight of the African disabled child.  This earned him recognition from the organizers and a standing ovation at the end of the conference.

With so many important issues taking place in the country and other  social programs running and vying for space, it was a great achievement that the National Media came on board to highlight issues of disability and recognize the efforts MYCEPA are making towards helping the government in providing a service to the cerebral palsy children in Zambia.

We take this opportunity to thank the media for their part in supporting small projects like ours, we are greatly humbled by your participation and together we can bring change and to help break the stigma associated with disability and make Zambia a better country for those marginalized and who could not be heard without your help.

Awareness and Fundraising walk

On the 17^th October 2009 Temba and his colleagues organized an Awareness/Fundraising Walk in Lusaka, from ZESCO Headquarters to Arcades Shopping Mall.  The theme was “MYCEPA – Giving Hope to the Cerebral Palsy Children in Zambia.”  This Initiative was supported by:

• Investrust Bank
• Radio Phoenix
• International School of Lusaka (The Group)
• Zambia Society of Physiotherapy
• Manzi Zambia
• Arcades Shopping Centre Management
• Kabulonga Boys High School
• Salvation Army Band
• Chisamba local community, and others.

We got the support of Road Transport and Safety Agency (RTSA)  who  accompanied us all the way to Arcades. Manzi  Valley provided us water, Salvation Army Band led us in the march, The New Apostolic Church Libala Congregation Orchestra gave us soothing music, friends from Chisamba and Lusaka joined in the march, giving out flyers.  Mr. Andrea Makulu and  Ms Catherine Mwondila of Radio Phoenix gave us the escort just in case of accidents, and Arcades Management provided the venue for finishing off.  We did not get the Guest of Honor from Ministry of Community Development and Social Services due to national duties  but Mr. Andrea Makulu handled the programme very, very well.

We did not make a lot of money but the message was delivered, questions from the public were answered and a lot of fliers issued out along the way. All in all the walk  gave us a very good exercise  it  turned to be a day out for our friends from Chisamba and due to the friendly atmosphere, we all felt like one big family.  The icing on the cake was having the RTSA in attendance, that the road was cleared of motorists for us made our cause feel special and the effort worthy.

We raised a total of K1,843,150

We thank all who contributed and participated, it was  more of an awareness event and we are grateful to those who gave.  We hope in future we could put our heads together and do more fundraisers like this.

Fundraising

After the launch we intensified our networking both locally and abroad, and also participated in several programs including the World Physiotherapy Week activities.

This was concluded with an awareness march in Lusaka on the 5^th September 2009.   MYCEPA’s participation and contributions were highly recommended by the organizers.

After this awareness march, Temba had meetings with representatives from Stanbic  Bank,  Longman Zambia Ltd, International School of Lusaka, Lions Club of Kapila, Pangaea, Zambian Breweries and many more.  I had opportunity to meet these representatives to fill  them  on what Temba has explained about cerebral palsy and MYCEPA

During the awareness week and match, Temba networked and engaged some participants from Stanbic Bank, Longman Zambia Ltd, International School of Lusaka-The Group, Lions Club of Kapila representative, Zambian Breweries representative and many more. The idea for MYCEPA’s Awareness/Fundraising was born.

Investrust Head Office

MYCEPA was invited at Investrust Head Office  for the official handover ceremony of the ZK30 Million pledged by our patron on 25^th July 2009-Official Launch.  Temba, Nyambe, Barbara and myself were warmly welcomed the Corporate Managing Director Mr. Phiri, and Public Relations Manager Andre Makulu.  The press from FM Radio Station, Radio Phoenix and Times of Zambia were in attendance. We missed the cameras because of the judgement on the 2^nd Republican Presidents’ case which was going on at the High Court. All in all it was a beautiful occasion.  We all received T-shirts with the Investrust Bank Logo and MYCEPA Logo.

Official Launch of MYCEPA

The next assignment was to set the date and plan for MYCEPA’s official launch.  After making sure all the stake holders would be available, the date was set for 25^th July 2009. The task was a big challenge but we had the help of many people:

• The District Commissioner-Chibombo District  (Colonel  Chabalakale Rtd
• De la Croix Representative  (Mrs. Sybille du Pack)
• The Honorable Member of Parliament-Chisamba Constituency  (Hon. Moses Muteteka)
• MYCEPA Patrons:  Mr. Friday C Nhdlovu   & and Investrust Bank; Mrs. Archie Hinchcliffe, Cerebral Palsy Africa (CPA) & Mr. Kennet Westmacoat
• Community Development & Social Services Department (Mr. Simmy Chapula)

• Zambeef Products Huntley Farms (Mr. Frances Grogan)
• Sunshine Seedlings (Mr. & Mrs. Terry Tom)
• Ecoveg  Farm Limited (Barbara & Dutch Gibson)
• Fringilla Farms & Guest House (The Woodley Family)

• Radio Phoenix  Staff (Mr.  Errol Hickey)
• MYCEPA Executive Members

• Gart Research Station Personnel (Dr. Muliokela)
• Nottinghamshire Police Aid Convoys Representatives (Lindiwe Mukutu & Isaac Kapambwe)
• Kabulonga Boys High School Staff & Headmaster

• Kabulonga Boys High School Special Unit Section (Temba)
• Cerebral  Palsy Parents from Copperbelt (Beatrice Nkandu)
• The local police, churches,  communities  and friends all contributed to make this launch a success.
• Mr. Roberts of   Capital Fisheries donated 20kgs of fish towards the Kabulonga Boys High School-Special Unit and accompanying staff
• Mr. Muimo of Quarry Farms contributed a porker and a goat towards the parents who travelled from Lusaka and the Copper belt
• Mr. Kennett Westmacoat contributed K400,000. Towards the soft drinks for the mothers and others who have travelled from Lusaka and the Copperbelt.

Our Patron and Investrust Bank pledged ZK30m (Thirty Million Kwacha) and our Area Member of Parliament ZK10m (Ten Million Kwacha) every year from the Constituency Development Fund.

The list could go on and on and the result of these many partnerships was a beautiful launch on 25^th July 2009.  A memorable day for MYCEPA, our cerebral palsy children and their parents.

Breaking ground

On 15th July, just a week before the Official Launch of MYCEPA, ground breaking for the first staff house was done and the tank-stand and the water tank were mounted.

On the 18^th July, our first Executive Meeting was held under the Mukuyu Tree next to the container.

We realise the road ahead will be difficult, but our dream of a permanent Cerebral Palsy Rehabilitation Centre is also taking shape.