Emma Grace became a St. Jude patient April 2015 when she was only 4 months old. She had been diagnosed with a rare form of bone marrow failure called Diamond Blackfan Anemia. Her condition is caused by a genetic mutation which wouldn’t not allow her bone marrow to produce red blood cells. In order to survive she required blood transfusions every 2-4 weeks. Along with nightly infusions of medication to get rid of excess iron build up in her organs from the life saving blood transfusions.
Spring 2022 it was decided for her have the best quality of life it was time for her to receive a bone marrow transplant. To date this is the only “cure” for DBA. On August 27th Emma was admitted into the bone marrow transplant unit at St. Jude and on September 6th, 2022 she received her new cell from a very generous donor in Europe. It was a perfect matched unrelated donor or as they call it MUD. She was discharged from the hospital a short 23 days after her transplant.
After a long year of isolation Emma has had all restrictions lifted and has started 3rd grade in person with all of her friends. She is absolutely thriving and wanting to do everything she can. She has since joined the drama club at school, helps with morning announcements, and wants to try cheerleading this year. Once the summer heat lets up she also plans to get back to riding her pony and prepping for the 2024 Barrel Jam for St. Jude.
Emma will soon head to St. Jude for her yearly post medical work up. At the end of a week full of back to back appointments she is scheduled for surgery to have her subq port removed. This will be very symbolic and emotional event (atleast for me). Her port was necessary for her blood transfusions because she had very bad veins. By removing her port it means we are closing that chapter of our lives and opening the door to a brand new beginning.
Because of St. Jude Emma will be able to live a normal life like any other 9yr old. After 9yrs on this wild ride I am not sure I know what normal will look or feel like but I sure can't wait to find out! So please help us give back to the place that has given us so much hope for the future!!!
How your donation helps:
- Families never receive a bill from St. Jude for treatment, travel, housing or food — so they can focus on helping their child live
- Treatments invented at St. Jude have helped push the overall childhood cancer survival rate from 20% to more than 80% since it opened in 1962. And we won't stop until no child dies from cancer.
- St. Jude shares the breakthroughs it makes, and every child saved at St. Jude means doctors and scientists worldwide can use that knowledge to save thousands of children.
Thank you for your support! Together we can help St. Jude change the world.