Towards the African Humanist Forum, communities and local NGO’s put into practice Humanist values. In Kisumu County in Kenya, Lavina Achieng Odour 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 lead in creating awareness on disability issues affecting children, youths and adults in the wider community of Kisumu County aiming towards Kenya at large. Heart to Heart Smile is registered with the National Council for Persons with Disability as a DPO (Disabled Persons Organization).

Lavina´s story in her own words

I am Lavina Achieng Oduor a mother of 3 girls, I founded Heart to Heart Smile Organization, out of my passion for care after seeing my brother suffering with mental disability and getting discriminated and stigmatised in the community. Not only him but also our family members faced discrimination and stigma. That, inspired me to form “Heart to Heart Smile” which was later registered, in the year 2018 to advocate for the rights of children young and adolescents with disabilities, working closely with their caregivers and parent who face stigma, denial and rejection within the community.

Working hand in hand with other organizations within the community ‘Heart Smile Community’ based organization started to create awareness on disability issues affecting children, young and adults in the wider community. Currently we are looking forward to starting a rehabilitation Centre for Care and Support to people with these conditions.

Our main goal is to Advocate for Community Based Rehabilitation that will promote Dignity, Protection and Prevention for the disabled, protecting them from violence and respectful of their rights.

People with disabilities are regarded as the most underprivileged members of the community due to their conditions in nature. They mostly need specialized attention and care. This is given very little attention sometimes it remains the duty of the family members which sometimes results to burden to the family. There are no facilities to support people with disabilities.

Our values:

Respect: we are Focus on People with Disability and the disadvantaged people: we empathize, rather than sympathize. We encourage community participation and empowerment of the most disadvantaged.

Accountability: we promote mutual accountability and ownership for our clients, we value the uniqueness of others and the varied perspectives they provide. We treat each other with dignity and respect. We demonstrate our commitment and continue our development through our diversity action plans to PWD.

Honesty: we acknowledge that Everyone performs better when respected honestly for    his or her unique talents. That’s why we foster an open, inclusive environment of cooperation and teamwork among those with disability.

Transparency: our services embrace accountability; one is not possible without the other.  We work to provide service is best demonstrated 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 the month of October. There is however need to create awareness on the two conditions as early as possible to enable the general population help in supporting individuals living with those conditions.

Heart to Heart Smile will join global community in to mark international day for Spina Bifida and Hydrocephalus Day on 25th October 2022. The aim of the World Spina Bifida and Hydrocephalus Day is to raise awareness and understanding about Spina Bifida and Hydrocephalus. On this day, Heart to Heart Smile with the aid of like-minded organizations and individuals will advocate and promote the rights of persons living with Spina Bifida and Hydrocephalus and also celebrate with our warrior caregivers who struggle to raise up these remarkable children with these conditions.

In Kenya there are 6.3 to 7.5 cases per 10 thousand births. If treated and cared properly these children can develop and live happy and fulfilling lives.

October is Spina Bifida Awareness Month—a time to celebrate the people living with Spina Bifida and their families in Kisumu County. Every day, this community struggle by themselves, go through the numerous challenges with little or no society support. It is therefore important for us to raise awareness and support to those around us affected by Spina Bifida. As a community, we can do this by spreading the word about Spina Bifida in society, bring focus to administrators or to the larger networks of which we are a part of. This is also a great time for us to discover new ways to get involved in awareness and advocacy activities.

Moreover, this year we are not only aiming at creating awareness but also meeting the following objectives:

  • Educating the community about Spina Bifida and hydrocephalus conditions
  • Teaching care givers how to manage those with Spina Bifida and hydrocephalus
  • Early intervention measures to prevent the two conditions
  • Reminding persons with Spina Bifida and hydrocephalus that they have rights

Partners Involved

Heart to Heart will partner with the National Council for Persons with Disabilities, County Council of Kisumu, Tinada,  and other interested stakeholders in Kisumu, such as Kisumu Bike Club, to help us in creating awareness on Spina Bifida and hydrocephalus conditions and also assist in a fund drive. We are still seeking out partners to join in awareness creation which is key to successfully marking the event.