Towards the African Humanist Forum, communities and local NGOs put humanist values into practice. In Kisumu County in Kenya, Lavina Achieng Odor shares with Pressenza her experience in supporting children affected by spina bifida (SB), hydrocephalus (HC) and other disabilities.
The heart-to-heart smile rehabilitation project
Heart to Heart Smile Rehabilitation Project is a community-based organization (CBO), founded in Kisumu County, Kenya in 2013 and registered in July 2018. Heart to Heart Smile has since taken the lead in raising awareness of disability issues affecting children. children, young people and adults. in the wider community of Kisumu County targeting Kenya as a whole. Heart to Heart Smile is registered with the National Council for Disabled People as a DPO (Disabled People’s Organisation).
Lavina’s story in her own words
I am Lavina Achieng Oduor, mother of 3 daughters, I founded Heart to Heart Smile Organization, out of passion for care after watching my brother suffer from mental disability and face discrimination and stigma in the community. Not only him, but also our family members were discriminated against and stigmatized. This inspired me to form “Heart to Heart Smile” which was later recorded, in 2018, to advocate for the rights of young and adolescent children with disabilities, working closely with their caregivers and parents who face stigma. , denial and rejection within the community.
Working hand in hand with other organizations within the community, the Heart Smile Community based organization has begun to raise awareness of disability issues affecting children, youth and adults in the wider community. Currently, we are eager to start a rehabilitation center for the care and support of people with these conditions.
Our main objective is to advocate for community-based rehabilitation that will promote the dignity, protection and prevention of people with disabilities, protecting them from violence and respecting their rights.
People with disabilities are considered the most disadvantaged members of the community due to their conditions in the wild. They most often need specialized attention and care. It is given very little attention, sometimes it remains the duty of family members, sometimes resulting in a burden on the family. There are no facilities to support people with disabilities.
Our values:
Respect: we are Focus on people with disabilities and disadvantaged people: we sympathize rather than sympathize. We encourage community participation and the empowerment of the most disadvantaged.
Responsibility: we promote mutual responsibility and ownership for our clients, we appreciate the uniqueness of others and the varied perspectives they offer. We treat each other with dignity and respect. We demonstrate our commitment and continue our development through our diversity action plans for people with disabilities.
Honesty: we recognize that everyone is more successful when they are honestly respected for their unique talents. That’s why we foster an open and inclusive environment of cooperation and teamwork among people with disabilities.
Transparency: our services embrace responsibility; one is not possible without the other. We strive to provide service that is best manifested in practice through honest communication and open sharing of information.
World Spina Bifida and Hydrocephalus Day – 2022
World Spina Bifida and Hydrocephalus Day is celebrated every year in October. There is, however, a need to raise awareness of both conditions as early as possible to enable the general population to help support people living with these conditions.
Heart to Heart Smile will join the global community in marking International Spina Bifida and Hydrocephalus Day on the 25the October 2022. The purpose of World Spina Bifida and Hydrocephalus Day is to raise awareness and understanding of spina bifida and hydrocephalus. On this day, Heart to Heart Smile, with the help of like-minded organizations and individuals, will defend and promote the rights of people living with spina bifida and hydrocephalus and also celebrate with our warrior caregivers who are battling to raise these remarkable children with these conditions. .
In Kenya, there are 6.3 to 7.5 cases per 10,000 births. If treated and cared for properly, these children can thrive and lead happy and fulfilling lives.
October is Spina Bifida Awareness Month— a moment to celebrate people living with spina bifida and their families in Kisumu County. Every day this community struggles on its own, going through the many challenges with little or no support from society. It is therefore important for us to raise awareness and support those around us affected by Spina Bifida. As a community, we can do this by raising awareness of Spina Bifida in society, focusing on administrators or the larger networks we are part of. It’s also a great time for us to discover new ways to get involved in awareness-raising and advocacy.
In addition, this year we aim not only to create awareness, but also to achieve the following goals:
- Educate the community about spina bifida and hydrocephalus conditions
- Teaching caregivers how to manage people with spina bifida and hydrocephalus
- Early intervention measures to prevent both conditions
- Remind people with spina bifida and hydrocephalus that they have rights
Partners involved
Heart to Heart will partner with the National Council for the Disabled, Kisumu County Council, Tinada, and other interested stakeholders in Kisumu, such as the Kisumu Bike Club, to help us raise awareness about spina bifida and hydrocephalus conditions and also help with fundraising. We are always looking for partners to join in the outreach which is essential to successfully mark the event.
