For Sickle Cell Families, Knowledge is Power

When you’re told your child has a chronic illness, you have a lot of questions. That was the case for Johanna Mack-Wesson, whose 12-year-old son, Joshua Mack, has sickle cell disease.

Here, Mack-Wesson talks about the support she gives and receives as the mother of a child with sickle cell disease.

As we rode down the streets in Frisco, Texas, my son Joshua asked a question that surprised me: “Momma, will my sickle cell ever go away?” I answered: “No, Baby. Sickle cell is with you for the rest of your life. But remember — you have sickle cell anemia, it doesn’t have you.” “OK,” Joshua replied.“So does that mean that I can do anything I want to do?” My answer was: “Yes you can. But you have to watch out to make sure you have enough water in your system and rest when you feel tired. You can do whatever your heart and mind will let you do having sickle cell anemia.” “OK,” was all that he replied.

I’m a mother of a sickle cell child. When he was 10 months old, Joshua suffered a stroke that left his right hand impaired. To make sure that there’s enough oxygen in his body and that he doesn’t have too much iron in his blood, Joshua undergoes blood transfusions every six weeks at The Center for Cancer and Blood Disorders (CCBD) at Children’s Medical Center in Dallas. Joshua, now 12, has spent many nights and weeks in the hospital because of pain in his chest, or for other issues related to sickle cell disease that may make him sick.

However, today Joshua is doing better and performing better in school and doing physical activities every chance he gets.

As a mother coping with a child with sickle cell anemia, it isn’t easy. It requires attention, understanding and a lot of time and caring. Watching Joshua blossom into a young teenager has been a blessing to our family. There were many difficult days and nights that left me wondering what and why my baby was suffering so much with the effects of his disease. What could I do to help him?

Support Group and Activities Help us to Feel Less Isolated

I still have questions about sickle cell disease, but now I have a group of other parents who can relate to my experience. I have teamed up with this group in the CCBD Clinic for Sickle Cell Anemia to help reach out to newcomers and to get support and understanding from the older patient families.

I have been aboard the organization since 2007. As part of our efforts, we parents team up and plan different fundraisers every year. We hope the money will help lead to a cure for this disease. The money raised also assists with various activities for the sickle cell clinic and Camp Jubilee, the special camp for children with sickle cell disease that Joshua and other children attend.

Yearly holiday party

Each year, I also organize the holiday Christmas party for sickle cell patients at Children’s. The purpose of the party is to give our children and staff at the clinic an opportunity to interact with each other and their families other than while during a clinic visit.

The party — with crafts, dancing, great food and a special visit from Santa — also offers a chance for other families to get to know one another, to see who their child’s peers are not only at school, but also at Children’s.

I’ve watched this event grow from the time Joshua was a baby to now, and the smile that the children have while they’re at the party is a peaceful one, a pleasant one, one that reflects the fun they’re having. Keeping this event going not only lets the children have something to remember, but it’s also a chance for all families to come together, and enjoy a time of laugher and fun with one another — in spite of what we have to go through on a daily basis with a sickle cell child.

At the party, Joshua gets a chance to see his friends from Camp Jubilee that he otherwise may only see or hear from once a year.

Dealing with sickle cell anemia is hard, but thanks to Children’s, a 12-year-old boy understands what sickle cell is, what it does, and how he has to cope with it in his everyday life. Joshua now asks questions to understand why he has to deal with things differently from other children that he’s around every day. It’s takes a lot out of me to explain what he needs to know and how he was born with sickle cell.

But at the end of the day, my heart and mind are at peace. I feel good about sharing information with not only my son, but also with others who have no idea what sickle cell anemia really is.

For more information on Parents with A Cause for Sickle Cell Anemia or to check out our upcoming events, visit the PWACSSC Dallas Facebook page.


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One Response to For Sickle Cell Families, Knowledge is Power

  1. Liberty June 28, 2012 at 11:50 pm #

    This post has helped me think things tohrguh

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