Meet The Green Family

"For our family, having a rare disease has been extremely isolating as many don’t understand what we are going through. We were hoping to find a sense of community and a support group to lean on, which is why a family friend introduced us to WARD’S Foundation.‍"

During my pregnancy with Charlotte, I had a normal NIPT test at 11 weeks gestation and a normal anatomy scan at 20 weeks gestation. At birth, the delivery was uneventful and Charlotte passed all of her screenings. We were sent home with a “healthy” baby.

I had a lactation appointment when Charlotte was 8 weeks old and she commented on her coloring and felt concerned about her sallow skin. Charlotte also seemed to be sleepier than usual and fatigued easily while feeding during this appointment. After a visit to the pediatrician, we were sent to the emergency room for a more comprehensive work-up. Charlotte’s hemoglobin was critically low at 2.9 and she was established as a St. Jude patient while in the ER. Charlotte really only showed signs of increased fatigue, poor feeding and had sallow skin for about a week prior to being sent to the emergency room.

It took roughly a month to receive Charlotte’s diagnosis. We did an anemia genetic testing panel in early December 2023 and we received those results on January 11, 2024. Our world has been rocked. There have been so many ups and down and unknowns. We have learned a lot about Diamond Blackfan Anemia and what Charlotte’s life will look like going forward. We have been focusing on the amazing care she has and will continue to receive in Charlotte, and the support system we are so blessed with. We have also made it our mission to raise awareness of Diamond Blackfan Anemia and fundraise for the DBA Foundation, so we started a nonprofit, Charlie’s Hope.

Charlotte seems like any other kid on your typical day. She does not have many limitations, just doctor’s appointments every 1-2 weeks and receives blood transfusions about every 3 weeks. She is currently trialing corticosteroids. Charlotte will also struggle with fatigue and irritability when her hemoglobin starts dropping, so that will affect her more as she gets older and is involved in more activities at school and socially. Unfortunately, there are not many treatment options for DBA.

For our family, having a rare disease has been extremely isolating as many don’t understand what we are going through. We were hoping to find a sense of community and a support group to lean on, which is why a family friend introduced us to WARD’S Foundation.

IN MEMORY OF

Charlotte Green

Diamond Blackfan Anemia

Raise awareness

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By telling your story, you provide support to other families in similar situations and help us raise awareness to advance rare disease support. If you would like to share your rare disease journey, please contact us at forward@wardsfoundation.com.