In the United State where this disease is the most common neural tube birth defect, yet many people do not know about it in our communities. Every day, approximately 8 million babies are born in the United States and every year about 1,500 to 2,000 babies are affected.

 

The Keita's family has firsthand experienced on the demands, difficulties, and challenges of living with and managing a child with Spina Bifida. And as a result of their passion, they co-founded Lamin Keita's Hope, a nonprofit organization that provides support to individuals living with Spins Bifida in United States and Sub-Sharan Africa. Lamin Keita's Hope will continue to support families impacted by spina bifida by supporting the National Spina Bifida Association, participating and raising funds annually for Carolinas Walk-N-Roll  for Spina Bifida, and by creating programs to increase support to families impacted by Spina Bifida.

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The organization has four main components for USA Charter:

a)    A parental support groups. 
b)    Financial support for parents
c)    Providing parent care package
d)    Advocacy and community engagement 

Parental support group: The organization will initiate a long-term virtual support group that will meet once a month for 90 minutes. During these virtual conversations, parents will be invited into this safe space to bond, share their experiences, lessons learned, and practical advice with other parents who have a greater understanding of what their day-to-day entails. 
 

Financial Support: Hospital cost for children born with spina bifida are high and may be covered by insurance; however,  most insurance does not cover other costs such as incontinence items until the age of five, for example diapers or mobility management equipment, for example wheelchair and walker. Hospital stays and surgeries for children with spina bifida are many and lengthy. The organization ill provide families with much-needed items not covered by insurance and make hospital stays less stressful for families. The organization will provide diapers for children (birth-5 years) born with spina bifida to families who needs it. Providing the diapers will help alleviate the financial responsibilities of families. The organization will coordinate an equipment exchange program where parents can donate equipment their children no longer need to other parents. This will make parents to receive free equipment they currently need. This exchange program will allow experienced parents to help new parents and lessen their personal financial expenses. 

 

Providing Parent Care Packages: The organizations goal is to reduce the stress associated with long periods in the waiting rooms and hospital stays, by providing parents with care package include blankets, reading materials, Care bears and gift cards to purchase food during hospital stays.

 

Advocacy and Community Engagement:  The organization will organize an annual community Family Fun Day for children born with spina bifida and parents and guardians. The annual Family Fun Day will bring awareness to Spina Bifida and highlight the responsibility of managing care for children with spina bifida. It will also be an opportunity to raise funds for the organization. As the community grows and strengthens, the organization will encourage play dates between children born with spina bifida. This will form companionship and deliberately may initiate strong friendships and healthier social relationships.