Telegram - Serving Metropolitan Detroit Since 1944

It's not every day that a child born into this world grows up with the reality, knowing that they may not live past the age of 40. Imagine being a parent and being told by doctors, that your child's lifespan will be shorten because they were born with a genetic illness called, Sickle Cell Anemia. A heartbreaking reality, it is, at that very moment. How will you guide your child through life? How will you treat them? Will they make it to their 18th birthday? Will they experience graduating college and having a family of their own? Most of all, being the parent and feeling the burden that you passed the genes to your child.

Well, that was the case as recent as the 1980s. Many sickle cell patients had that grim reality of not knowing, if it were all possible that they would make it to live to see the age of 40. But with continued research, support and awareness, patients are living "their best lives". You may ask the question what does a day look like for a sickle cell patient? Somedays consist of being in pain, doctor's appointments, hospital stays, being absent from school or work and then there are days, that we are feeling great and amazing and we don't even think twice about our illness.

Fellow Sickle Cell Warrior Sequioa Morris, 40 years old, wife, and mother of 2 adult daughters who also live with sickle cell. Gave insight, as she shared her experiences of adversity.

Clifton: What has your experience been living with sickle cell anemia?

Sequioa: When I was younger, I wanted to do everything fast because, I didn't know how long I'd live. I wanted to be married at 16 by the time I finished high school. I wanted to have children. I was told I wouldn't live to see 18. My parents raised me and kept me in prayer and in church. If I can make it to live to 70, it's an accomplishment. I didn't think I would make it past 18 and here I am 40. I never wanted to take anything for granted"

Clifton: What does it feel like being a parent who has sickle cell and children with the illness?

Sequioa: It's hard. I'm grateful. If my kids had to have it, I am glad that I have it to understand what they going through. I was the only person in my family who had it. This is why awareness needs to be everywhere because you never know when people in their family will have it.

Clifton: What advice would you give to other parents who have children?

Sequioa: Don't fear. Don't worry. Stay strong because the child feeds off your strength. Build a village and good support system because they will need it and so will you. Stay strong and lean on others.

Dr. Wanda Whitten-Shurney, Pediatrician, advocate, CEO and Medical Director of SCDAA (Michigan Chapter), here in Detroit has more than 32 years of experience taking care of sickle cell patients. She also holds a seat on the National Heart, Lung and Blood Institute, where she is charged with helping the federal blood disease agency formulate policies, goals and standards. She shares her experience treating more than 1,000 patients.

Clifton: In the year 2020, what strides have been made for Sickle Cell?

Dr. Shurney: For 20 years, there was only one disease modifying medication-hydroxyurea and people were afraid to take it because it is a repurposed cancer drug. Now in the past 3 years, there are 3 new medications.

Sequoia and her daughters Israe'L and Temperance

Clifton: Why is Sickle Cell Awareness still important?

Dr. Shurney: We still need to raise awareness because the horrendous care that adult patients receive in the hospitals. Many doctors think they are drug seeking. They aren't getting the care they need. We need better treatment and better access to treatment.

Clifton: What advice would you give to parents, who's children have Sickle Cell Anemia?

Dr. Shurney: "A child with Sickle Cell has a purpose and a reason to be here"

September is Sickle Cell Awareness Month, get tested and know your Sickle Status. If you have children heading back to school, get more information, advise, or donate. Visit:www.scdaami.org.