SKYLER’S SPECIAL SOMETHING

  Copyright © 2022 Akua Boakye Okunseinde

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  Dedicated to all of the Sickle Cell Warriors. You are brave, strong, and incredibly special.

  One morning, Mommy, Daddy, and Skyler were taking a walk along the reservoir, as they did almost every Saturday morning. As Skyler ran along the gravel path, his mommy said, “Skyler, we want to tell you about something that makes you quite unique.”

  “What does unique mean?” Skyler asked curiously.

  Daddy said, “Unique means that you have something that makes you one of a kind, something that makes you special.”

  “That’s right,” Mommy added. “Your daddy and I both have a special trait, and when we made you, our two traits combined and gave each other a hug in your body. That unique combination formed a condition called sickle cell disease.”

  Skyler sat down on a rock, thinking about what Mommy and Daddy just shared. Skyler had heard these words—sickle cell disease—at the hospital many times but never understood what the words meant. “Am I the only one with this special . . . something?”

  Daddy held Skyler’s hand and said, “No, Skyler. There are actually 100,000 people with your special condition in the United States and many, many more around the world.”

  “That’s a LOT of people. I thought you said that what I have is unique,” Skyler said, proud that he remembered the word he had just learned.

  “Compared to all of the people on Earth, there’s actually a very small number of people with the combination of traits inside their body that creates sickle cell disease,” said Mommy.

  “How did you and Daddy know that my body has the combination?” Skyler asked, looking up at the birds.

  Mommy answered, “When all babies are born, their doctors perform tests in the hospital to make sure that they are healthy. Your doctor took the heel of your tiny foot and performed a blood test. When she got the test results, we learned that you have sickle cell disease. Your doctor explained that you will feel pain sometimes and that it’s important to take medicine every day to help your body feel better.”

  Daddy added, “When the doctor told us that you have sickle cell disease, it made us feel like we had been uniquely chosen, too. Because while all parents have to take special care of their babies, we knew we had to be extra cautious and careful to make sure you stayed safe and healthy.”

  Skyler took a minute to think about what his parents were saying. He stood up and ran down the gravel path again. He picked up a few rocks and threw them one by one into the reservoir, his favorite thing to do on Saturday morning walks.

  Skyler took a deep breath and said, “I understand that I have something that makes me special, but it makes things pretty hard sometimes. I want my body to feel good all the time so that I can run and play with my friends.”

  Daddy joined Skyler by the edge of the reservoir. “There are things that are easy to do that will help your body work really well. Drinking lots of water is very helpful. What you’re doing now, walking and running, is very good for you too! We just have to make sure that you drink even more water when it’s very warm outside,” Daddy said.

  Skyler took a big sip of water from his water bottle. He had never noticed before that his parents always made sure his water bottle was close by. “What about when it’s cold outside?”

  “When it’s cold outside, you have to stay cozy in your hat, scarf, and mittens,” Mommy said as she hugged Skyler from behind.

  “You know how we visit Dr. Diamond every month? We will have to continue to see your special team of doctors and nurses at the hospital. They will make sure that you continue to feel great and healthy,” Daddy said with a big smile.

  “Will it hurt when I visit?” Skyler asked nervously.

  “It may hurt a little bit at times, like when Ms. Teresa does your blood test every month. Your special team will also make sure you are taking your medicine every day,” Mommy responded. “And how about this? After your hospital visits, you can ask us for a special treat,” Mommy suggested.

  Skyler smiled, thinking about what treat he might receive after his next hospital visit. Then his expression became more serious.

  “Do you think my doctors and nurses will ever find a way for my body to stop needing medicine?” Skyler asked hopefully.

  Daddy turned from his view of the water and looked directly at Skyler, taking Skyler’s hand in his and swinging it gently as they walked. “Many scientists around the world are working hard to discover ways to make you, and all the people around the world with sickle cell disease, feel better forever,” Daddy answered.

  “We are all praying for these medical advancements every day,” Mommy added, taking Skyler’s other hand.

  “I will pray every day too, Mommy.”

  “Your future is bright, my dear,” Mommy said, “and we will do everything we can to ensure that you live healthy and happy.”

  Skyler hugged his parents and they walked back home along the reservoir, the sun beaming on their faces the whole way home.

  Afterword

  My son Tobi is my inspiration for Skyler’s Special Something. My husband and I found out that Tobi had sickle cell disease when I was eighteen weeks pregnant. We were living in London at the time, and I received a phone call with the news while I was at work. Upon receiving his diagnosis, I was anxious and scared, but at the same time incredibly determined to educate myself, family, and friends about how to ensure that Tobi’s health journey was one of optimism and possibility.

  Tobi had his first sickle cell crisis at eight months old, and he had four more crises before his first birthday. We made the decision to move back to the United States to be supported by family, as well as to be surrounded by the depth of sickle cell research and development in the New York tri-state area. Tobi, now three and a half years old, is doing exceptionally well. Tobi is fortunate to have a younger brother who is a Human Leukocyte Antigen (HLA) match to him. HLA typing is used to match patients with donors for bone marrow or cord blood transplants. Currently, a bone marrow transplant is the only known curative option for sickle cell disease. With Tobi’s matched sibling as a donor, we are preparing for Tobi to undergo a bone marrow transplant in the spring of 2022. The bone marrow transplant will replace Tobi’s abnormal stem cells with healthy cells from his brother. We are incredibly hopeful that Tobi’s transplant will lead to a sickle cell-free future!

  To date, Tobi’s regimen has helped to keep him healthy on his sickle cell journey. Please consult your hematology team to determine the best treatment for your loved one.

  Tobi’s Maintenance Regimen:

  • Penicillin (2x per day)

  • Folic acid (1x per day)

  • Hydroxyurea (1x per day)

  • Multi-vitamin

  • Lots of water!

  • Regular visits with his hematology team for blood work and checkups

  My husband and I are also constantly educating ourselves on the latest research on sickle cell disease and preparing questions in advance of our doctors’ visits. I want to recognize that we are incredibly fortunate and grateful to have the privilege of health insurance to afford this level of treatment and care for Tobi. My hope is that this book empowers parents and caregivers to have open conversations about sickle cell disease with their warriors. I also hope that our journey inspires the continued effort to close healthcare disparities for all sickle cell disease patients.

  I would like to send a special thank you to our tribe of sickle cell specialists and cheerleaders, quite literally around the world, who have supported us on our journey. If there is anything I would advise, it is to surround yourselves with people who can provide their knowledge, experience, and expertise on your loved one’s sickle cell journey. Thank you, thank you, thank you to:

  St. Mary’s Hospital in London, in particular Professor T. G. Teoh, Dr. Kirstin Lund, and Dr. Elvis Aduwa.

  Hackensack Meridian, Joseph M. Sanzari Children’s Hospital, specifically Dr. Steven Diamond, Dr. Jennifer Krajewski, Laura Goode, Annette Sinski, YoungJae Lee, and the phenomenal Teresita.

  Children’s Hospital of Philadelphia, in particular Dr. Kim Smith-Whitley and Trudy Tchume-Johnson.

  Woodhull Hospital of Brooklyn, specifically Dr. Cynthia Boakye and Dr. Elizabeth Roman.

  Tenafly Pediatrics, in particular Dr. Lynn Sugarman.

  Journal for Parents of Children with Sickle Cell Disease

  I invite you to bring this book to your meetings with physicians and nurses over the course of your child’s health journey. The bulleted list below is not an exhaustive list of wh

at you might discuss, but it is intended to serve as a prompt guide as you educate yourself on the disease and the right care for your child. There is space for notes, as I often leave appointments feeling a bit overwhelmed and later wish that I had written more information down! I wish you and your warrior all of the best on this journey.

  • Medication Regimen

  • Routine Visit Schedule

  • Annual Transcranial Doppler Screening

  • School + Caregiver Preparation

  • Emerging Sickle Cell Disease Research

  • Curative Options (Bone Marrow Transplant; Gene Therapy)

  About the Author

  Akua Boakye Okunseinde has been inspired to help children and families navigate special health conditions ever since her own son was diagnosed with sickle cell disease while she was eighteen weeks pregnant. She hopes that Skyler’s Special Something serves as a springboard for education, awareness, and empowerment.

  Akua earned her bachelor of arts in economics and political science at Tufts University and her master of business administration in marketing and entrepreneurship at Columbia Business School. She was born in New York City and raised in New Jersey. She currently works in advertising sales at Google in New York City and she is also the cofounder and chief creative officer of Karité, a skincare line she started with her two sisters.

  Akua currently resides in New Jersey with her husband, Folu, and her two young sons, Tobi and Kwasi. In her spare time, she enjoys exercise, traveling, and spending time with her family.

  To connect, please email akuaokunseinde@gmail.com

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  Akua Boakye Okunseinde, Skyler's Special Something

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