Sickle Cell Disease

Sickle Cell – A Parent’s Perspective #30forSickleCell

SupportMy first interview for #30forSickleCell comes from a mother with whom I can relate. I am happy God has allowed us to connect with one another to lend encouragement and  support as we raise our children. Although Sickle Cell (SC) disease may not affect every person in a family, it is something we must face together. 

Louisetta Williams and I connected with via twitter. After hearing her story I felt it was important to share in order to help others understand the importance of a strong support system both within the family and from the community.

Louisetta Williams is a single mom of four beautiful girls (her youngest child has SC), writer/future author and an aspiring entrepreneur.  

When was your child first diagnosed with Sickle Cell Disease (SCD)?

My daughter was diagnosed at birth, but we knew at 7 months because my husband’s blood was tested in order to donate a kidney to his mom.  When they told him he had the trait and I knew I had the trait; I informed my OB.

Were you already familiar with SCD and the challenges that sometimes arise?

Unfortunately, I had no idea of the road I was about to take. I began reading everything and asking my doctor questions but she could not really answer any of them.  So I just kept self-educating myself. 

What are some steps you take to keep your child healthy?

We eat plenty of green vegetables and I am constantly looking for more options and ideas to improve it even more daily. 

How are you raising awareness about Sickle Cell Disease and how can others help support this cause?

Last year, I decided to do something  besides cry and & pray. I wanted to give a voice to parents going thru this so I applied to write for sicklecellwarriors.com and got hired to write for parents. I currently write for them inspirational pieces and articles from my heart and experiences. 
 
SC Family Support Network Inc.SC Family Support Network Inc.Then, during one hospitalization, I became frustrated at the lack of support I have.  I had since divorced from my husband who had never supported me with our child’s illness and my only support since her birth had been my mom, who passed away from cancer in 2012.  I began to cry out to God begging for some help.  He answered me clearly and said create it.  And so he then [prompted me to start] my new nonprofit Sickle Cell Family Support Network.  We will be providing sitter services for children suffering from SC while they are in the hospital so their parents can work and or take care of other responsibilities. We will also be assisting them with setting up educational services & making sure they happen while the child is sick & able to do their school work.  And lastly we will be constantly advocating to make SC a talked about and known disease- raising awareness.

Is there one myth that you would like to dispel about people living with Sickle Cell Disease?

If they appear okay while on medication that does not mean the pain will not return.  Schools, especially don’t get it.  I try to stay ahead of the pain but often times they won’t give her medicine because they don’t understand the pain will return. 
In other words, it is not just pain that comes in the winter.  SC damages constantly unto death.

What do you want family and friends to know about Sickle Cell Disease and how they can best support the cause?

We need to support these families managing the care of their children.  People lose their income, places to live and end up neglecting other responsibilities because they are drowning without support.  I see it daily being said in SC communities.  Parents are suffering and no one is paying attention. We also need to advocate as African-Americans and people of other ethnic groups who are affected.  SC complications kill people and not many are praying or giving it the attention it deserves.
 
This month, we salute you! Keep fighting, keeping hoping, continue to rise above and support your child who carries the pain.
 
Louisetta, thank you for letting us hear your story. Blessings to you, your family, and your SC warrior!
 
Louisetta Williams  works as a full-time research assistant at the American Academy of Pediatrics. She also writes for sicklecellwarriors.com giving a voice to parents caring for children affected by sickle cell. Recently, she started a nonprofit organization to give direct support services to families of children with Sickle Cell set to launch January 2015.  She juggles all of this while working to finish her future children’s book project. Louisetta’s goal is to not only to become a published author but to in turn work in her SC nonprofit fulltime and spread awareness about SC. 
 
If you are looking for more support there are communities in your area that can help. The Sickle Cell Disease National Resource Directory has a list of Sickle Cell nonprofit agencies across the country.
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