Bone Marrow Transplant for Baby Jackson
Donation protected
As some of you know, Jackson has been fighting the odds to survive since the day he was born. Jackson was born 6 weeks prematurely with a hemoglobin of 2.7 g/dl. (Hemoglobin is the part of the red blood cells that carries oxygen to all cells in the body.) A healthy baby averages a hemoglobin of 20 g/dl at birth. When hemoglobin drops below 10 g/dl, people feel very tired and short of breath. Anything below 6.5 g/dl is considered life-threatening and organs in the body begin shutting down from lack of oxygen. It is truly a miracle that Jackson survived.
Jackson is now 8 months old and has been diagnosed with Diamond Blackfan Anemia (DBA), a very rare bone marrow failure disease without a cure. Jackson does not produce red blood cells and depends on blood transfusions every 2-3 weeks to stay alive. To date, Jackson has received 15 blood transfusions. We also discovered that Jackson cannot produce normal levels of neutrophils, a type of white blood cell that fights bacterial and fungal infections. Jackson has received neupogen injections daily to help his body produce neutrophils, however the injection has stopped working in his body. His immune system is very weak as his neutrophil counts randomly go to zero for days, and he is at high risk to become infected from the bacteria in his own body. This is why Jackson’s mom and dad minimally leave the house for what is necessary, scrub the house constantly to keep it clean, shower immediately when entering the house from the outside, and allow no family or friends to visit in order to reduce germ exposure to Jackson. Jackson has never left the house in his entire life other than for the constant doctor appointments and transfusions, weekly labs to draw blood and monitor his blood counts, and hospitalizations from being sick.
His condition has reached an urgent tipping point that requires additional medical intervention in the form of a bone marrow transplant in May 2019. While this next step brings with it a chance at a new beginning for Jackson to live a more normal life, it also brings on a new set of challenges. The entire transplant process takes almost one year and involves getting a central line through a vein in his chest, intensive chemotherapy to prepare the body for transplant, the transplant itself with a minimum of a 6-8 week hospital stay, and many months of recovery within a 5 mile radius of the transplant center. This requires an elevated level of care, resources, and support along with financial and logistical challenges including additional procedural costs (some but not all are covered by insurance), additional living expenses as the transplant will occur in a different city than which we live (Cincinnati), medications, and hands-on care for Jackson such as physical and speech therapy through transplant and the recovery process. With bone marrow transplant being a very involved, risky process, Jackson’s mom and dad both plan to be with him in Cincinnati. His mom had to give up her career when Jackson was born, and his dad will be working in a limited capacity from Cincinnati.
Jackson’s presence is felt every day, with his smile and laughter filling our hearts with joy and tears in our eyes knowing our son might be gone tomorrow. Since many people have asked how they can help Jackson and his family, we wanted to provide this avenue as your donation can help alleviate the financial burden that accompanies such an enormous shift in life and circumstances so that we can focus solely on Jackson’s treatment and recovery. We invite you to give, spread the word, and cheer on Jackson as he jousts his way to have a normal childhood and live a normal life. Please feel free to request more specifics on how the funds are being used or ways to give with your time and resources. If you want to follow Jackson’s progress more closely, we’ll be posting updates here:
Jackson's Joust
Root for Jackson and spread the word!
Jackson is now 8 months old and has been diagnosed with Diamond Blackfan Anemia (DBA), a very rare bone marrow failure disease without a cure. Jackson does not produce red blood cells and depends on blood transfusions every 2-3 weeks to stay alive. To date, Jackson has received 15 blood transfusions. We also discovered that Jackson cannot produce normal levels of neutrophils, a type of white blood cell that fights bacterial and fungal infections. Jackson has received neupogen injections daily to help his body produce neutrophils, however the injection has stopped working in his body. His immune system is very weak as his neutrophil counts randomly go to zero for days, and he is at high risk to become infected from the bacteria in his own body. This is why Jackson’s mom and dad minimally leave the house for what is necessary, scrub the house constantly to keep it clean, shower immediately when entering the house from the outside, and allow no family or friends to visit in order to reduce germ exposure to Jackson. Jackson has never left the house in his entire life other than for the constant doctor appointments and transfusions, weekly labs to draw blood and monitor his blood counts, and hospitalizations from being sick.
His condition has reached an urgent tipping point that requires additional medical intervention in the form of a bone marrow transplant in May 2019. While this next step brings with it a chance at a new beginning for Jackson to live a more normal life, it also brings on a new set of challenges. The entire transplant process takes almost one year and involves getting a central line through a vein in his chest, intensive chemotherapy to prepare the body for transplant, the transplant itself with a minimum of a 6-8 week hospital stay, and many months of recovery within a 5 mile radius of the transplant center. This requires an elevated level of care, resources, and support along with financial and logistical challenges including additional procedural costs (some but not all are covered by insurance), additional living expenses as the transplant will occur in a different city than which we live (Cincinnati), medications, and hands-on care for Jackson such as physical and speech therapy through transplant and the recovery process. With bone marrow transplant being a very involved, risky process, Jackson’s mom and dad both plan to be with him in Cincinnati. His mom had to give up her career when Jackson was born, and his dad will be working in a limited capacity from Cincinnati.
Jackson’s presence is felt every day, with his smile and laughter filling our hearts with joy and tears in our eyes knowing our son might be gone tomorrow. Since many people have asked how they can help Jackson and his family, we wanted to provide this avenue as your donation can help alleviate the financial burden that accompanies such an enormous shift in life and circumstances so that we can focus solely on Jackson’s treatment and recovery. We invite you to give, spread the word, and cheer on Jackson as he jousts his way to have a normal childhood and live a normal life. Please feel free to request more specifics on how the funds are being used or ways to give with your time and resources. If you want to follow Jackson’s progress more closely, we’ll be posting updates here:
Jackson's Joust
Root for Jackson and spread the word!
Fundraising team: Team Jackson (4)
Jamie Dermatis
Organizer
Virginia Beach, VA
Alexandros Dermatis
Team member
Panagiota Dermatis
Team member
Robin Coady
Team member
