Highlights from 2009/10
Kawempe Initiative for CWDs in Kampala
In partnership with Uganda Society for Disabled Children (USDC), Kawempe Caring Support Centre is implementing Children with Disabilities program. KCSC is charged with the responsibility of executing Child Welfare activities with an aim of empowering and education of children with disability in Bwayiise parish.
On April 10th, 2010, Barclays Bank staff visited KCSC and donated relief items to Children with Disability and their families in and beyond St. Kizito Bwayiise Parish.
The exercise begun at 2:00pm with registration of all beneficiaries, an exchange session where parents shared their experiences and encouraged each other with advice. The days activities were organized by Mr. Andrew Young (Mobilizer), Mrs. Olive Bwana (Board member USDC) and Deo. Barclays Bank staff had an opportunity to interact with the beneficiaries and learnt that there is an alarming increase of domestic violence. This is mainly brought on by the fact that more and more mothers are giving birth to disabled children as a result of wide spread Malaria in the slams St. Kizito Bwayiise Parish. The exercise was attended by 96 mothers and children with disability. Items donated included blankets, food items, mosquito nets, toys and soap.
Beneficiary Participation on World Women’s Day, Hoima March 2010
In terms of child participation, a children’s forum was organized by the national council for children and other thematic groups under the umbrella of Uganda Child Rights NGO Net work (UCRNN). USDC had representation of two disabled children who made contributions to the children’s memorandum that was presented to the children’s parliament.
During the women’s day celebrations held on eighth of March USDC in partnership with Right to Play chose to have this year’s celebration in Hoima district where USDC is its partner in CRC work. We had the children with disabilities and USDC staff participating in sports and giving inspirational messages about education of children especially the girl child.
Left: Elijah Tumusiime(behind Dorcus), USDC’s CRC Patron in Hoima participating in a Right To Play Women’s Day event in Hoima under the theme: “Girls Can Do It Too” where gold medalist Dorcus Inzikuru(centre: yellow shirt) was the guest of honor.
Christmas Art Play Day for CWDs in Jinja December 2009
Visiting Professional Development Manager from Field Work Education in the UK, Ms. Kat Turner, hosted some USDC supported children in and around Jinja for a fun filled Art and Painting Xmas party on the 23rd December 2009. Upto 15 Children were mobilized by the USDC supported PSG coordinating office in Jinja, the Network of Parents Support Groups (JINEPAS). The event took place at Soft Power education center and the USDC team and parents of the children were invited to participate in the activities for the day. The part ended with a visit to Bujagali Falls, It was a special Christmas and we all enjoyed the fun.
Disabled Children and their parents in Jinja enjoy an arts and crafts play day at Soft Power Education Centre, Bujagali December 2009.
Commemorating International Disability Day Luwero December 2009
Left: USDC Executive Director Susan Kisitu and L&A Officer Florence Ndagire (right) meet the Prime Minister Apollo Nsibambi at the 2009 International Disability Day Celebrations in Luwero on 3rd December 2009 and (Left children of Arapai primary school CRC presenting a song during the day of the African Child in Soroti )
SPECIAL NEEDS EDUCATION TEACHER TRAINING COURSE AT LUBOWA
In December 2009, USDC hosted a wide range of teachers from a mix of schools and even district authorities, from all over Uganda to a teacher training workshop at La Bonita Conference and Training Centre in Lubowa. The training was carried out by visiting Professional Development Manager from Field Work Education in the UK, Ms. Kat Turner.
Mobilization was done through liaising with our regional teams and Voluntary Service Overseas Volunteers specializing in SNE. One of the teachers was from a private school, one was a SNE schools inspector, and some were from SNE schools or units whilst the majorities were from standard primary schools. The aim of the workshop was to provide teachers with practical skills, knowledge and understanding of both teaching and disability to ensure more disabled children are well supported in school and to encourage teachers to advocate for disabled children at a local level, to inspire them to act as champions for disabled children education in their own sub counties and districts. All this in the hope to make a real difference to disabled children in their communities.
GRANTS - USDC received a number of generous grants from trusts and foundations and donor agencies across the globe over the last few months. We have detailed some of these under the specific projects they will fund. Other grants were given towards the general running of the charity.
MEMBERSHIP DRIVE - USDC received a number of generous grants from trusts and foundations and donor agencies across the globe over the last few months. We have detailed some of these under the specific projects they will fund. Other grants were given towards the general running of the charity.
GRANTS - USDC received a number of generous grants from trusts and foundations and donor agencies across the globe over the last few months. We have detailed some of these under the specific projects they will fund. Other grants were given towards the general running of the charity.
VISITS - USDC received visits from its partner in the UK. These included Terry Waite MBE a patron of Able Child Africa’s, and his family, Wendy ACA Board Member) and her husband Roger Ford and Leanna Arain (An ACA Board member).
Left: Wendy and Roger Ford board members of Able Child Africa at USDC, January 2010. Centre: Terry Waite MBE () and his family visiting USDC offices in August 2009 and Leanna Arain at USDC fundraising dinner in May 2009.
FUNDRAISING EVENTS
On 2nd May 2009, the Uganda Society for Disabled Children (USDC) hosted a grand fundraising dinner on at Speke Resort Munyonyo’s Flag Mast Garden and welcomed many distinguished guests, friends and supporters of USDC to enjoy a night of fine food, wine and entertainment. Our guest of honour for the evening was Leanna Arain, one of the founders of USDC from London, UK. While Qwela Band serenaded the guests with their fine fusion of jazz and African Soul tunes, guests where treated to a 3-course dinner and enjoyed several fun speeches, a raffle draw and auction session. But amidst all the fun - we raised nearly 28 million shillings towards our work with disabled children across Uganda.
Left: USDC Executive Director Susan Kisitu, SMS Medis’s Simon Kaheru (MC) and Able Child Africa Director Maryann Mhina (right) at the USDC Fundraising Dinner at Speke Resort Munyonyo May 2009.
Construction of rehabilitation facilities.
With support from the States of Jersey and Guernsey, we started construction of 7 resource rooms in the following schools: Eruba Primary School in Arua District, Waiga and Kisomere Primary Schools in Buliisa district, Kiryandongo and Jeeja Primary Schools in Masindi district. In addition, construction works were also completed for a dormitory for the blind children at Ngeta Girl’s Primary School in Lira district, while works continued from the previous year of the Physiotherapy Unit and Children’s Hostel in Adjumani Hospital and construction of an Orthopaedic workshop and a Children’s Hostel in Lira district.
Resource Rooms and Adapted toilet at Eruba Primary School, Arua (below)
Constructed Resource rooms at Ngeta Girls Primary school Lira(left) Kisomere Primary School Buliisa(centre) and Kiryandongo Primary School, Masindi (right).
Before
The grass thatched structure put up by the community for classrooms and toilets at Kisomere (left) Waiga 2 (Right) primary schools in Buliisa district before USDC and Build Africa supported the construction of classroom, toilets and resource rooms as above.
Highlights from 2008/09
Domesticating the Convention on Rights of Disabled Persons (UNCRPD 2006)
Last year we reported gradual improvement at both international and local level in legislative and policy environment for our work in childhood disability following the Convention on Rights of Disabled Persons (UNCRPD 2006). However, nationally the different state parties and other development actors involved have not yet agreed 
on a way forward. Domesticating the UNCRPD in Uganda has been negatively politicized by parliamentarians and this has delayed the process so far.
While the parliamentarians want to go back and consult the people to allow them domesticate the convention, this requires funding whose source is not yet identified and is viewed as a selfish move by other players. On the other hand the Minister for disability says there is urgency for domestication such that the existing Disability Act could also begin to be implemented for Uganda to stand a chance to report progress to the UN, in September 2010.
(Above: Florence Ndagire, USDC’s Lobbying and Advocacy Officer reading the Persons with Disability Act: Right to Employment document developed by International Republican Institute in 2009).
UGMP
As a member of the Uganda governance monitoring platform, USDC monitors government progress in terms of human rights, education of the vulnerable groups as well as social protection of the child with disabilities. This platform provides indicators to each of the members to track progress on 28 out of the 32 government commitments which are derived from the democracy and political governance section of the Africa Peer review mechanism national programme of action.
The status report indicates a mixed picture, with the democratization process posting generally more positive gains especially outside the official state domain; the human rights situation showing negative trends from previous years and in particularly the incessant attack on freedom of speech and media as well as cases of intolerance in society. While corruption remains wide spread, some positive public actions have been undertaken that suggest that some agencies of state are strengthening their resolve to fight graft. In the area of conflict resolution and post conflict reconstruction; lukewarm progress is discernible but the demands for transformation greatly out strip current interventions.
USDC ED attends International Resource Alliance 28th International Fundraising Conference in the Netherlands
Susan Kisitu, the Executive Director, attended the 28th International Fundraising Conference that took place between the 24-27 October 2008 in Holland which was sponsored by International Resource Alliance. In November 2008 staff went for a retreat where programme design and implementation was analysed to come up with efficient ways of working with children with disabilities, stakeholders and donors.
Taking rehabilitation services closer to the community.
All our interventions in the medical rehabilitation of children with disabilities are geared towards one ultimate goal; enabling disabled children reach their full potential. Working in collaboration with surgeons from Mulago Referral hospital we took orthopaedic and plastic surgery services to the community through surgical camps and also engaged health professionals at local health centres to ensure that services reach grassroot communities through outreach clinics. Jos Eriga Perino, our Programme Officer for Northern Uganda, specifically Lira and Apac districts, successfully organised 5 sessions of orthopaedic and plastic surgery in which 172 CWDs received rehabilitative care. An additional 36 outreach clinics were also carried out at all the health centres to identify, assess and register CWDs for various rehabilitation services in Lira. In the year under the review, our PACT project in Lira registered 1,250 CWDs while 932 CWDs were registered under the LANOH project in Apac district.
Our Eastern region, which is currently implementing a Mental Health project, carried out 11 monthly outreach clinics treating over 484 children and their families affected by mental health problems. In Masaka district over 12 training sessions and home based care visits were made together with health professionals to families and CWDs affected and infected with HIV/AIDS. The identified parents and children with disabilities were counselled and linked to sources of treatment and other forms of support.
Highlights from 2007/08
USDC gets new executive director
Susan Nanjobe Kisitu is now the Executive Director for Uganda Society for Disabled Children. Susan has worked for USDC since 1989, initially as the Field coordinator in Luweero district and later as the Monitoring and Evaluation officer in Kampala, then the Field Director. Susan’s promotion to the position of Ag Executive Director, followed the retirement of Jackson Atria who served as USDC executive director for over 10 years. Susan comes with a wealth of experience in childhood disability and looks forward to carrying on with USDC’s good work to indeed ‘Br
ing out the potential in Children with Disabilities in Uganda’.
Fundraising Initiatives for 2008
This year we will run a series of events to inform the public about our work and raise awareness about the millions of children and young people living with disability in Uganda.
We are seeking support to implement activities that will enhance the integration of disabled children in the community. By participating in the upcoming fundraising events, you can support USDC raise much needed funds for our work and help break the social barriers that prevent children with disabilities USDC advocates for inclusive education for children with disabilities from full participation in community activities and decisions.
Events to look out for include the “Text and Donate” mobile campaign with SMS Media, a fundraising concert and dinner and our Disability Sports Challenge at a school near you.
We also have both Corporate and individual Membership schemes and encourage all to sign up today. So come on! Sign up and be apart of the growing family of supporters for
disabled children in Uganda.
Sarah Brown Visit 2007
“EVERY CHILD MATTERS NO MATTER WHERE IN THE WORLD THEY ARE”
- MRS. SARAH BROWN
On the 23rd November 2007, we hosted the wife to the British Premier Mrs Sarah Brown, who was in the company of Mr Terry Waite, at a reception at our offices.
During the visit, she was able to interact with some disabled children from Lira and Luweero districts, USDC board members, partners and Staff. Because she believes that every child matters, she pledged support for USDC’s work a commitment being followed up by Able Child Africa, USDC’s key partner in the UK.
Commonwealth Disabled People's Conference
The Disability Movement in Uganda organised a Commonwealth Disabled People's in Kampala , Uganda , as one of the pre-CHOGM events from 14th -17th November 2007 at Hotel Africana. This first ever disability conference in the commonwealth, was held before the commonwealth Peoples' Forum and before the Common Wealth Heads of States Meeting (CHOGM) with the aim to make disability a visible part of the Commonwealth Agenda. The theme for the conference was Promoting Disability Rights: The inclusive way for Transforming Commonwealth Societies to achieve political, economic and human development.'
The organizations behind this venture included National Union of Disabled Persons in Uganda (NUDIPU), Action on Disability and Development (ADD), and Uganda Society for Disabled Children (USDC). Realizing the unique opportunity provided by the Commonwealth Heads of Government Meeting (CHOGM) scheduled to take place in Uganda from 23rd to 25th November 2007, under the theme 'Transforming Commonwealth Societies to achieve political, economic and human development'the disability fraternity organized this forum in the wake of the adoption of the UN Convention on the Rights and Dignity of the Person's with Disabilities in December 2006. The convention was opened for signature and ratification by member states on the 30th of March 2007.
The CHOGM offered an opportunity to influence heads of government and relevant government ministries, to initiate collective action for the new Convention's ratification and implementation. It also offered the disability fraternity in Uganda an opportunity to place Disability as an issue of importance on the Commonwealth Agenda.
Common Wealth Children's Conference
USDC joined 11 other child focused NGO’ to successfully host a pre–CHOGM conference for children. 6 disabled children were sponsored by USDC to take part in this very exciting event where one of them was elected to the post of the committee member on the children’s committee. The elected children’ committee members attended the main CHOGM where they presented their Memoranda to the Common Wealth at the people’s forum.
Terry Waite Visit
Earlier in the year, we hosted renowned peace activist Mr. Terry Waite on the 22nd of July 2007 for a week-long visit to Uganda with his son Mark. Terry held a number of meetings with key government officials, met with the Kabaka of Buganda, gave keynote addresses at high profile gatherings like the New Vision Business Breakfast at the Sheraton. Together with his son Mark, he also visited Luwero district and interact with some children with disabilities in school at Balita Lwoogi PS. Terry’s visit was indeed very inspiring and one of the issues we USDC team, Terry, Mark and the Kabaka.
He later returned during CHOGM week and accompanied Sarah Brown for the USDC visit. He is seen here with Left: Maryann Mhina (Able Child Africa) and Mrs. Sarah Brown (right) at USDC.
Report of the Press Conference to Launch the Global Campaign on Education Week
On 16th April USDC launched its activities for the Global Campaign on Education (GCE) Week 2007. A press conference was held at Hill Preparatory School in Kampala. Some partners who participate in organizing the activities as well as a group of pupils from Hill Preparatory School were present. The media turned up in big numbers. The following media houses were represented: CBS FM, UBC Radio, Red Pepper / Radio West, Sanyu FM, Power FM, Family Radio, Top Radio, Record TV, Daily Monitor, New Vision and WBS TV.
The theme for this year's GCE Week is Education as a Human Right. We as a society, in cooperation with other partners, focus on the theme Access to Learning Materials for CWDs as an Educational Right. Our overall objective during this campaign is increased access of SNE learning materials to CWDs in Uganda.
Highlights from 2006/07
20th Anniversary Campaign 2006
USDC has been at the forefront of its CBR programme for over 20 years. To mark its 20th anniversary, USDC introduced “The disabled children's month” under the theme “A Chance to Be” on September 2nd 2006. The disabled children’s month will run from 2nd September to 2nd October every year. This month is about raising awareness about childhood disability and more importantly fundraising for much needed resources to support rehabilitation interventions for disabled children across the country.
This year USDC celebrated 20years of disability work. This followed similar celebrations of the society’s achievements by the USDC UK office. The anniversary was kicked off with the photo exhibition on the 28th August 2006 at Serena Hotel under the theme “A Chance to Be”
A Chance to Be Campaign – Photo Exhibition
As part of the activities to mark the 20th anniversary, the photo exhibition was held on the 28th August 2006 at Serena Hotel. The main objective of the exhibition was to showcase the works of disabled children, the Exhibition which kick-started the anniversary was presided over by the Minister of State for Disability Hon: Sulaiman Madada. The exhibition attracted individuals and organisations which include: Blind but Able, UNAB, COMBRA, ICC-U, ANPCAN, FHRI, CRNN, ESA, MVRC, UNAD, ADD, Kamwokya Christian Caring Centre, Kyambogo University (UNISE) and the Press. Individuals include: HON: MPs for PWDS and USDC Board Members
The exhibition went on for a week with people coming in one at a time. During the Exhibition Masekela bought a picture and his Colleague, Khaya, bought two pairs of shoes and a sweater from MVRC collection.
Hugh Masekela Fundraising Concert
On 2nd September 2006, USDC hosted a fundraising Concert at Serena Hotel Kampala sponsored by MTN Uganda, South African Airways, NCR and New Vision. The concert by renowned South African Jazz Musician Hugh Masekela was aimed at raising money to facilitate USDC in bringing out the potential in children with disabilities. This was preceded with a press conference by the Musician which aimed at giving him an opportunity to interact with the media.
Month long preparations for the concert were carried out, with tickets sold at 3million for corporate tables, 300,000 for VIPs, 50,000 for standard, tickets were sold at USDC offices and selected MTN outlets. The concert attracted people from all walks of life including Business people, Politicians, Religious leaders and this was made possible by the Jazz Singer who has been accredited with such songs as Bring back Nelson Mandela, Stimela, Grazing in the Grass.
He also visited the USDC offices and Capital Fm where he carried out lobbying activities for USDC by endorsing the 100shs Concept. This brought together all the core sponsors of the 20th Anniversary.
100Shs Campaign
As also part of the 20th Anniversary activities, USDC organized a fundraising drive aimed at raising funds for disabled children. The campaign involved use of donation boxes by placing them in strategic locations across the country, Voice billing, and SMS media through which the public made their contributions towards the rehabilitation of disabled children. It was code named 100shs concept following the idea that 100 shillings can make 100% difference in a disabled child’s life therefore Stanbic in partnership with the New Vision, Beat and Capital FMs and USDC, on the 24th August 2006 launched the 100 shillings Concept Note in Stanbic Banking Hall.
The campaign which according to Stanbic’s MD was to raise 600 Million Uganda Shillings would run for sometime. Donation boxes were placed at all Stanbic branches, Simba Telecom Outlets and many other Partner organisations, Academic and Religious instutions and business Centres where the public was encouraged to drop as little as 100shs. The Campaign has so far raised public concern for Children with Disabilities which in return has encouraged individual donations from members of the public such as Mr and Mrs Sudhir Ruparelia, Mr Kabagambe(Hoima District), MR Mzwaki Mbulhi (A South African Musician). It is important to note that the campaign is still going on as preparations for the official closure are underway.
Visit to the Parliament
As part of Lobbying and Advocacy, on 30th October 2006, members of staff in USDC led by one of the board members Mr Bakidde paid a visit to the Speaker of Parliament Hon Edward Senkandi. This visit was mainly to thank the speaker for the work he is doing as regards to the disability fraternity and update him on the on going activities being carried out by the society. The Executive Director handed over a photo and 20th anniversary documentary to the speaker as a sign of appreciation.
Visit to Little Angel’s Babies Home
As also part of Bobi Wine storms, Little Angels Babies home was visited by some of the USDC staff members, the aim of this visit was to show that even vulnerable groups such as the little Angels can contribute to the disabled children in Uganda. The Director of the home Max Mugisha pledged full support to children with disabilities by contributing to the 100shs campaign.
Disability Challenge
This took place at International School of Uganda on 30th September 2006 where Children with disabilities were to take part in a sports challenge with able bodied children from the International School of Uganda, the sports activities included Kicking footballs while blinded folded, filling water bottles. Children with Disabilities came from the districts of USDC Luwero, Children from the IDP Camps, and Children from Kampala School for the deaf, they exhibited a great performance irrespective of the different disabilities. They were later given prizes for participating in the challenge and this was made possible by the different sponsors who included NCR, MTN Uganda, Simba Telecom, Stanbic Bank, AON. The Chief Organizer was USDC board member Sue Farmer.
Case stories: Sarah’s Story
Dr. Anderson Tsangi on the right examining Regina Namubiru on April 26th in Cure
Children Hospital Mbale
Sarah’s Story
My name is Namuli Sarah 18 years staying in Nabweru Sub. Parish and due to lack of school fees by my only surviving mother, I got pregnant to a man who deceived me. He took me away from home until I delivered my child Namubiru Regina. But three months before delivery, he had started mistreating me because he had got another girl in the same area, I would have one meal a day and additions to that he could come and start beating me and yet he knew very well that I was pregnant.
Time came for delivery, he refused to take me to the hospital and had stopped coming back home. He only heard from friends that I have delivered. He still failed appear to the hospital until I was discharged and reaching home, he denied being the father of Regina because she was suffering from hydrocephalous. He sent me away a month after delivery; I had to go back to my mother who also could not welcome me back home. She advised me to go and DUMP my child since the father had denied the child before she could welcome me in the house.
This did not go well with me and our neighbors, and one of them gave a store to sleep but I suffer too much because I do not have food, beddings and medication is very expensive to me and a times I fail to go the hospital due to lack of transport and I can not carry my child footing to Mulago she is too heavy.
The Heart of a mother
Mary Kabito is a trained primary school teacher, who lives in the rural town of Masaka, Southern Uganda. She is 49yrs old and has seven children. Four of her children were born with cerebral palsy and of the four, two have multiple disabilities. Whereas many parents in her situation would despair, Mary knew that the best way to cope with the situation would be to get to know more about disability.
Members of USDC met Mary at a sensitization exercise that was being carried out in Masaka district at the time. With support from USDC, she joined a parent support group where she met other parents of children with disabilities and learnt skills in the management of disability and in caring for disabled children. The parents also learn skills in community sensitization and together work at raising awareness about childhood disability prevention & management as well as the stigma that comes with it. They champion the rights of disabled children and sensitize the community on these rights and the causes of disability.
During the sensitizations, Mary realized a number of children with disabilities were not accessing education due to their disabilities and the distance to the nearest school. Coupled with her own children’s educational needs and that of other children in the area, Mary made the incredible decision to set up a school for children with special needs in her own home with support from her parent group. The children she cares for are often abandoned, orphaned and abused but generally do not have the opportunity to go to school and even if they did, would slip through the cracks in the regular school system.
Today after 10yrs, the Kakunyu School for Children with Special Educational Needs which started with 4 children (Mary’s own) has developed into a bigger school and she has over 25 children attending.
The children are taught all the main curriculum subjects alongside gardening and agriculture, farming and livestock management and several other life skills. With continuing support from USDC, Mary offers a lifeline to disabled children who would otherwise have no chance at an education or a better life. She is an inspiration to many. Recantly Mary receieved support from ………. And has constructed a modern block to accommodate classrooms, therapy rooms & rest rooms. She is now planning to start admisitng non disabled children for programmes alongside the children with disabilities.
Hope for Noe Birungi
Before After
11 year old Noe has reason to smile today. She developed a bone tumor at 5 years and lost both her parents at 9 years. The 5th born of 7 children, she was not sure of her future and lived every day in excruciating pain due to the tumor. What had started out as a small swelling above the eyelid, had deteriorated into the collapse of the entire left side of her face, dragging down her eye and its socket to her cheek bone. With the tumor slowly eating away at her skull, her late father had tried to find out what caused the swelling and took her to the nearby health centre. After several visits with no improvement, he turned to the traditional doctors who provided no remedy either.
in 2005 father, concerned for his daughter status , took her to another health centre where they where referred to Masaka regional referral Hospital. Because the tumor had spread extensively she was then referred to Mulago National Referral Hospital. With help from the Masaka Referral hospital, Noe got help from USDC and after several calls for support by staff and management, Noe got support from one of the USDC board members who offered to pay the 500,000 needed to operate on her. Today Noe is back in school and can enjoy play and games with other kids which she couldn’t do before because of the pain and the stigma due to the tumor, she is now able to enjoy the life of a child once more.
Back to basics for Frida
9yr old Apio Frid from Dakabela village, Dakabela parish, Arapai Sub County, is the only surviving one of a set of triplet. She was born normal but became disabled after nerve damage as a result of a poorly administered quinine injection, a condition called Gluteal fibroisis. This resulted in paralysis of the muscles in her lower limbs. Prior to surgical intervention by USDC, she was unable to sit normally, walk or do any activity that required use of her legs. He father is disabled and 2 of her siblings are too.
The parents are peasant farmers and cannot afford treatment for her condition. USDC supported her corrective surgery and after the surgery Frida can freely walk and do all other activities. She has now resumed school having dropped out earlier due to her disability. In her own words during the follow up visit said; “I am happy because am able to go back to school”. The father on the other hand says;”the intervention has made me popular in the village because people come and ask me how my daughter got help”.
Above: Freda’s mother shows the stitches to the visiting team
Facing life anew!
John Baptist is a 19year old youth from Rwabeng Subcounty, Rwama Village, Masaka District. “JB”, as his friends and family like to call him, has a rare condition called neurofibromatosis.
John Baptist is very worried about becoming blind. He has so far had one shot at reconstructive surgery, but requires some more support to enable further correction. USDC’s local team in Masaka are doing what they can to get support but it is not easy because of the complexities and the costs involved. So far, CORSU has supported his surgical cost for one operation but there is need for more resources to ensure that he fully recovers.
John has in some sense been abandoned by his family and is trying, with incredible determination to make a life for himself. He is beng sponsored by USDC and is learning at Masaka Vocational Rehabilitation center, an intervention that has the potential to change John’slife by equipping him with skills for self sustainability.
John has real ambitions for his future but needs support. He wants to run his own carpentry business and start his own workshop to produce furniture. He just needs surgery and a start up grant to change his life for the better.
Sarah’s courage under extraordinary challenges as a parent.
Ngambe Sarah is a 43 year old Mother of six Children, three living and three deceased. She is also a widow having lost her husband in 2007.
According to Sarah, all her children were born normal, healthy and beautiful. However at the age of two years, each one of them developed general body weaknesses in the muscles progressively developing complications that ended up severely disabling them to the point of severe mental retardation, inability to move independently and for some loss of sight.
So far, Sarah has lost 3 children and of the three survivors it is only 20 year old Haruna Lubega who is not yet severely disabled and therefore the one that helps with household chores, but he too has a very low IQ and can only be productive under intense supervision. Sauda Namwera and Sumaiya Nakabitto are so severely disabled; Sauda is not even able to toilet himself soiling the house at random. His sight is weakening and the muscles atrophying. Communication with the two severely disabled children is by touch and smell.
To meet her children’ needs, Sarah earns a leaving by selling Banana peelings and selling ready to serve rice / pilao. In addition she sells water at Ush 100 per 20ltr Jerry can.
When we visited Sarah, she told us that her children never live the house as the neighbours complain about their outlook (Always drooling saliva and wet), and smell, she has therefore made a conscious decision to keep them indoors at all times. The bright side to this horror is that Sarah and her children do not have to rent a house, the two rooms they live in were built by her late husband.
Sarah suffers a number of challenges including high maintenance costs of the children as well as negative attitudes and stigma from the neighbours. She seeks support to boost her business by opening up a whole sale shops to deal in Beans, Rice, sugar and maize floor.
Sarah’ is just one of the desperate stories of families of Children with disabilities in Kawempe division, Kampala district. USDC has for years been focusing its attention to the rural areas of Uganda (where we are in 22 districts), arguing that urban areas especially Kampala are over serviced with many providers. Unfortunately that was everyone else’ thinking too so, eventually we have a city with many desperate citizens, unattended to.
This year, we at USDC, we would like to start focusing some attention to such families in Kampala; we shall therefore be using our time tested approach of reaching out to the communities through the Community Based Rehabilitation (CBR) approach to reach a number of children with disabilities in Kampala. We shall also initiate a Parent support group for self advocacy, experience sharing and support among the families.
