We are once again starting our St. Jude fundraiser. This is our 5th year doing this in conjunction with the St. Jude barrel jam. Last year we were able to raise well over $5k and would love to do so once again. Here is a Emma’s story about how she became a St. Jude patient and what is currently happening with her treatment.
Our 4yr old daughter Emma Grace became a St. Jude patient April 2015. On March 10, 2015 I decided to take little Emma to the doctor. Little did I know this would be the day our whole world would change.
Little Emma hadn't been eating or sleeping good. I figured she just had a virus but wanted to have her checked out. At the doctors office we discovered she had a hemoglobin of 2 which is life threatening low. A normal hemoglobin is between 11-14. Her heart rate was also in the 200s because of this. We were rushed to the closest children's hospital which happened to be Vanderbilt. Where we spent 24hours in the PICU receiving blood transfusions and then another 4 days on the oncology floor. During this time Emma received 3 blood transfusions and underwent a bone marrow biopsy.
We learned that Emma had a extremely rare genetic mutation that caused Diamond Blackfan Anemia or DBA a type of bone marrow failure. The mutation causes her bone marrow not to make enough red blood cells. Upon this diagnosis I decided to have Emma's care transfered to St. Jude Children's Research Hospital.
At St. Jude Emma received DNA testing that confirmed this diagnosis. There is no cure for DBA and it is something that she will not outgrow and will have to be dealt with all her life. She will also be at a high risk for developing cancers such as leukemia.For the first year of Emma's life we made the 3 hour trip to St. Jude every 4 weeks for her to receive blood transfusions. She has since gone through 2 failed steroid trials and now receives transfusions every 2-3 weeks and must take medication daily to make her body excrete the iron starting to build up in her liver due to the numerous blood transfusions.
To date she has received 38 blood transfusions but despite all of this Emma continues to be a happy rambunctious little girl. We continue to pray that one day they will develop better treatments or a cure.
So please help support St. Jude the place that has given us hope for our little Emma Grace.How your donation helps:•Thanks to donors like you, no family ever pays St. Jude for anything.
•St. Jude will continue to improve the treatment of childhood cancer and other deadly diseases through its groundbreaking research.
Join me! Together we can help St. Jude change the world.
How your donation helps:
- Families never receive a bill from St. Jude for treatment, travel, housing or food — because all a family should worry about is 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 more than 50 years ago. We won't stop until no child dies from cancer.
- St. Jude Children's Research Hospital is leading the way the world understands, treats and defeats childhood cancer and other life-threatening diseases. St. Jude freely shares the discoveries it makes, and every child saved at St. Jude means doctors and scientists worldwide can use that knowledge to save thousands more children.
Thank you for your support! Together we can help St. Jude change the world.