Being the parents of a Sickle Cell Warrior (SCW), we know giving up is never an option. Even when we don’t receive the needed support to get through each crisis, we can never lose hope or our smile. Your child survives merely through the pain from your strength/smile. But who holds you up when exhaustion hit, hungers lingers and sleep is absent for days? Who comes to the hospital and says go home and take a nap, I’ll sit here with your child? Who comes to sit in your absence when you have taken all your paid time off and you need to go to work? Who cares for your other children while you have another child in the hospital in pain or homebound? Who will drop off or pick them up for school? Who will support me in managing my child’s Sickle Cell Disease (SCD) and my family? These are all the questions constantly running through the minds of the parents of a SCW.
When my mom died in 2012, my mind immediately thought about the support I’d be missing that she provided me with my warrior. We had a tight schedule managing my baby’s SCD and it ran smoothly like a business. My mom completely relieved that stress of wondering who would be with her at the hospital or who would be with my kids at home. Losing my mom and then getting a divorce put me in complete isolation. Now not only was my support system gone, but the chances of getting my then husband to understand it’s his role to pick up wasn’t happening either. Then being a full time student, full time employee and single mom did not mesh with my baby’s hospital stays or the times she was homebound. So I dropped out of school in my last year of college but my job was still being affected by my absences. It was all on me! So what was I going to do now? I broke down and began to cry and pray. God told me to create my help. Create my support. So I dried my tears and decided to take action.
Every great struggle births great ideas! I research how to start a nonprofit volunteer network to provide SC parents/families with support. Out of my struggle, Sickle Cell Family Support Network (SCFSN) was born; a nonprofit that will provide these direct services to SC families here in Chicago first and in the future nationally. SCFSN goal will be to provide sitter services and help to establish educational services for all SC hospitalized children. SCFSN will make sure the child receives their educational services and continue to follow up so it continues on schedule.
Parents of a SCW need this support so they can not only go to work but take a mental break from the hospital settings. That parent sits day and night next to their child and goes without sleep, food, and baths and without interacting with their other children or going to work. The other children need support to show them their life does not have to suffer because their sibling is sick. Moreover, if the parent is stressed out and exhausted, they cannot successfully care for their sick child or find coverage to take care of children at home. My mission is to provide every SCW parent and family, within my reach, free support services for SCW hospital stays or homebound times to promote a stronger family foundation.
Sickle Cell Family Support Network is in its beginning stages and will be ready to serve the Sickle Cell families by January 2015. The board and I are very excited to start these needed services and invite you to donate to our humble beginnings at our fundly.com page: fundly.com/sickle-cell-family-support-network-inc. Please contact SCFSN at firstname.lastname@example.org with any questions or comments about us.