Updated: Sep 4, 2019
By Shayler Richmond
Photo by Shayler Richmond
La’Shardae and Eric Scott are parents of three sons: Eric, Emory and Evan, their youngest two sons, Emory and Evan are living with Sickle Cell Anemia, their lives motivate this dynamic couple to live and life of advocacy, and inspired their book, titled “What Dr.Shurney taught me;” the first installment in their children’s book series.
“I’m hoping this book will start conversations and bring about more awareness for Sickle Cell Disease because there is more that goes into living with Sickle Cell, including treatment and legislation that is often overlooked,” said Eric.
Sickle Cell Anemia, or Sickle Cell Disease (SCD) is a genetic disease with many harmful and painful side effects, including: pain episodes, infection, hand-foot syndrome, eye disease, acute chest syndrome, or stroke. There are four types of SCD varying in severity. Fevers over 101 degrees often require at least a 48 hour stay in the hospital to ensure the patient's blood is bacteria free and their hemoglobin levels are balanced.
In January of 2015, Sickle Cell Disease first hit home for the Scott’s when their middle son Emery was diagnosed at 2 months old, Emory is now 3. Since then the Scott family recalls over 50 trips to the hospital.
Sickle Cell Disease is an uphill battle. Those living with Sickle Cell do not often die from the disease itself, but from Sickle Cell complications. It is hard for SCD patients to fight off infections, just one way Sickle Cell complications can lead to death if not well managed.
Sickle Cell Disease can only be passed to a child when both parents carry the Sickle Cell Trait, which is Hemoglobin C. SCD primarily targets African Americans, 1 out of 13 African Americans have the Sickle Cell Trait. Sickle Cell trait occurs in about 8 percent of the African American population in the United States .
To showcase that this disease is not solely a black issue,“What Dr.Shurney taught me,” presents a variety of people from different backgrounds.
“It is hard to bring awareness to an African American issue, especially when we are ignorant to the situation within our own community, so I feel education and awareness are most important. We have to take advantage of every opportunity to educate people to inform a broader spectrum of the world, so less people are suffering in silence,” said Eric.
Initially as a mother, and carrier of the C trait, La’Shardae was overcome with guilt and emotion when her middle son was first diagnosed.
“We aren’t trying to send a message that parents can’t be vulnerable. I definitely feel parents should be able to show vulnerability in front of their kids, but in moments where your child is hurting you can’t panic, and you have to stay strong for them because they are going to react how you’re reacting,” said La’Shardae.
When Evan, their youngest son was also diagnosed with Sickle Cell in 2017, they had become experts and La’Shardae had already begun working for the Sickle Cell Disease Association of America (SCDAA) where she met Dr.Whitten-Shurney. Dr.Shurney took La’Shardae under her wing and taught her everything she knows about Sickle Cell.
“What Dr.Shurney taught me,” was originally created to pass knowledge to her eldest son, Eric, who desired to understand what his younger brothers are living through. This book is a medium for youth and others to develop a deeper understanding of the Sickle Cell disease and the conditions in which Emery, Evan and many others are living through.
The Scott family does their best to take it one step at a time during each pain episode Emory or Evan experience. Implementing warm baths, pain medication, and other pain reducing practices. As La’Shardae has experienced this disease through her sons, her guilt and remorse has transformed into strategy, optimism, realism, persistence and resilience.
“You can’t force your kids to live in a bubble. We have to empower our children while their young to understand that their situations and circumstances are not a handicap. We have to create spaces where people living with Sickle Cell and those informed on Sickle Cell are comfortable and not judged because knowing your status is nothing to be ashamed of,” said La’Shardae.
“What Dr. Shurney taught me,” unpacks how you get Sickle Cell and how it affects the body.
“This book really filled a void. The best way to communicate to children is through storytelling. Before this book we didn’t have a good way to discuss having Sickle Cell disease with youth, but now we have the story and an easier way for parents to communicate this often dense information to their children,” said Dr. Shurney.
Currently La’Shardae is a Director for The Sickle Cell Project, which serves 11 counties in Ohio. She is responsible for hemoglobinopathy counseling, which is counseling of the blood. Expected to graduate from Eastern Michigan University in December, through education and experience she has developed a level comfortability dealing with youth and families surrounding SCD because she lives in their shoes.
“Everything has a purpose and there is a reason why things happen. Typically what doesn’t affect someone doesn't matter to them. We’re selfish to the scope of only things that matter to us, so I’m grateful for the opportunity to advocate for thousands of other kids beyond the care I give to my own,” said La’Shardae.
Life has taught this couple how to better balance life. Raising their children and always having to make life work keeps them grounded in life.
“Life is precious. Life is short. And there is too much going on in this world to not take advantage of life and be happy, so I tend to let a lot of small stuff go, and push my sons to experience life because I know I can’t protect them from everything, and there is a whole life they have to live on top of being Sickle Cell Warriors,” said Eric.
For more information on Sickle Cell Disease visit the Centers for Disease Control and Prevention, your local Sickle Cell center or directly contact the Sickle Cell Disease Association of America (SDAA).
To purchase, "What Dr.Shurney Taught Me," by La'Shardae and Eric Scott visit the link below: