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Sickle Cell Families Need Direct Support Services

Sickle Cell Families Need Direct Support Services

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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 scfsninc@gmail.com with any questions or comments about us.

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About Author

Elle Jenae

Elle Jenae

My name is Louisetta Williams and I’m a proud single parent of a 4 beautiful girls ages 18, 13, 8, and 5. I love to refer to my daughters as my Z-babies because all their names start with a “Z” and online I often call them Z1, Z2, Z3 or Z4 in accordance of their birth order. My youngest Z-baby is 5 years old and she is my Sickle Cell Warrior. I work as a research assistant at the American Academy of Pediatrics where we research diseases that affect children all over the world. I love my job because our research helps enhance children’s health worldwide. My passions outside of work are reading, doing family activities, going to church, writing and helping people in any way I can. I wanted to write for Sickle Cell Warriors because I want to be the voice for parents who fight for their Sickle Cell Warriors daily. I believe by sharing my experiences, research and testimonies of how I cope with dealing with an ill child; I can help someone. I want to be an advocate for SCD parents who sacrifice so much and let them know that it’s okay to be perfectly imperfect.

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3 Comments

  1. sio
    sio December 22, 21:45

    I completely applaud what you are doing. Nobody really understands how much work and struggle it is to have a sickle cell warrior. I have a beautiful 2 yr old daughter and your services would be extraordinary, wish to have them available in nj. May God bless what you are doing

  2. Elaine
    Elaine February 15, 09:20

    I applaud you!! I started a support groups many years ago in Eastern NC but the needs your described weren’t not discussed. It would be awesome to have a support group of that nature. We need to respond to the trials of parenting a SS child as a family and be there to assist in any way possible. Please give me a call at 919-225-5717 this evening if possible. I would love to discuss the opportunity of initiating a warrior’s group in this area. Thanks and God bless!!

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