Featured Family

Astra Smith, Sickle Cell Family Advisory Council Member

We found out that Dalin had sickle cell a week or so after birth. I remember exactly where I was sitting and the feeling that came over me when I found out. Initially I felt strong, thinking I can handle this. After all, I have a husband who has the same illness. Then I remember the pediatrician asking me if there was someone I could talk to after our phone call. That is when the worry and anxiety came over me because this care was going to be different than what I experienced with my husband.

Dalin's dad has sickle cell, and I have the traits, so we knew it was a possibility for us to have a child with sickle cell. But, Dalin's journey has been very different from his dad's.

The first three to four years of Dalin's life was hard. It seems like his fevers would only come in the evenings. If Dalin had a fever of 101.5°F or greater that meant a trip to the Emergency Room. Those trips usually lasted well into the night, sometimes even turning into overnight stays. They were so frequent that packing a hospital bag became routine, it took little to no thought. There was one year that my husband and Dalin were admitted at the same time. Talk about being pulled in all directions physically and emotionally. While making sure they were receiving the best care, I also had to tend to Dalin's older brother's needs. Making sure he had what he needed each day at school and celebrating his birthday that same week.

Since being in grade school, Dalin has not experienced any sickle cell crisis that has caused him to be hospitalized or miss school. Hydroxyurea therapy has proven to be successful for him. Each month (aside from COVID-19) Dalin goes in for appointments for blood work. The majority of his visits his blood counts are good. Other times we will have to withhold medication for a week until his blood counts return to normal and then we are able to resume his medication.

Dalin continues to do well health wise and academically!

1. What is one piece of advice that has helped you in your/your family’s journey?

Listen and follow your child's needs in knowing how to care for them. Sometimes Dalin will tell me he is experiencing pain. I will then ask him if he wants medication so that he can make the best decision for his care. It’s difficult because most of the time he will tell me no. However, I am mindful that I must empower him to care for himself.

2. Why is being on the family advisory council so important to you?

I want to help the next parent or guardian that may not know what to ask or where to begin. If I can help another family's journey easier, that will make my journey better.

3. What is your favorite thing to do as a family?

Playing board games is my favorite activity with my family; probably because I am the competitive one.

4. What is your favorite camp or sickle cell event/camp that you have done as a family and why?

I volunteered for Camp Jubilee and then Dalin went as a camper a few summers later, so we were familiar with the ways of camp. However, for us to go as a family to a Camp John Marc Family Getaway weekend was a new and different experience. Dalin’s Dad and brother got to enjoy camp as we did previous summers, what joy it brought to my heart. We all wait in great anticipation to visit again. Dalin loves Camp Jubliee and has been able to make friends. I asked Dalin what he loves about camp, he said he gets to be with others just like him. We also enjoy attending the Gill Center holiday party as it is a time for him to reunite with his camp buddies.

5. Any other things you think would be helpful for people to know about you?

Find other sickle cell families to connect with. It is comforting talking with families who have a better understanding of my journey.