Parents of the sickle cell FAC share their "why" for serving

My name is Jaimee, and this is my story of why I joined the sickle cell Family Advisory Council (FAC). 15 years ago, I sat scared and wide-eyed in a clinic room with my 4-month-old baby, a doctor and a social worker trying to absorb all the information being presented about my son's diagnosis. It was overwhelming to say the least. Despite the doctor's reassurance, it was still a heavy weight to carry. My son has sickle cell disease and I felt completely isolated. I didn't know what to do or where to turn. Over the years, I have found my footing on this journey of being a mom to two sickle cell warriors. And if there is anything I can do to make another sickle cell caregiver's journey easier, I'm happy to pass along what I have learned, lend a listening ear and support our care team and staff, warriors and families.

Other sickle cell FAC members “why” stories

Annalise's “why” is, "I joined to help speak about personal experiences with sickle cell and to bring encouragement to others. I want to be part of making positive changes in the care that my son receives and make a difference for those after him."

Annalise believes the FAC has made an impact on the care other sickle cell warriors receive at Children's Health. We collaborated with the care team to revamp parent education and requested QR codes to be added to all publications, so caregivers can easily scan and save documents to their mobile devices for on-the-go reference. 

Astra says, "I joined the FAC to be in the company of other parents of children with sickle cell. To come together to develop ideas/support systems for other parents who may have similar needs as my family."

Astra lives out her “why” by serving on the board of Camp Jubilee, bringing kids with sickle cell disease together, so they can know they are not alone. Astra often reminds us, "you don't know what you don't know," and she uses her expertise in special education to create resources to help other warrior families navigate 504 and IEP plans. 

Kara stated her “why” is, "I joined because I wanted to feel heard when it comes to the care for my son and others like him, I wanted to help others by being a voice for those who sometimes feel unheard. I like that our opinion matters, and I feel a part of something that is bigger than just my household."

Those of you with a child in transition, might have recently seen Kara's why in action. The FAC spoke with the care team about the need for more transition resources and they hit the ground running creating new handouts and resources for our families. 

I like to think of the FAC as the PTA of the Gill Center Sickle Cell Program. We are a voice for our fellow warrior families, a liaison sharing the many resources available to us through Children's Health comprehensive care approach to healthcare and a cheerleader for our amazing care team and staff. 

We would love to add more members to our FAC! For more information and/or feedback, please visit the Family Advisory Network information page.