Aaron's Stem Cell Transplant
Donation protected
We are seeking to raise money to help with living expenses in the Washington D.C. area while our son, Aaron, undergoes a Stem Cell transplant. The process takes 4-6 months if all goes well and will require my wife to take a leave of absence from work to be there with him during this time.
Our son, Aaron Barr, was diagnosed with Chronic Gramulatous Disease (CGD) at 17 months in July 2007 after he was hospitalized with a really high fever and swollen lymph nodes in his neck. The doctors performed a biopsy on swollen lymph nodes and diagnosed him with the rare autoimmune disease. He was referred and accepted to a study with National Institutes of Health (NIH) in Bethesda, MD. We have been visiting NIH semi-annually since he was diagnosed and he follows a daily regiment of medication, which helps his body fight bacterial and fungal infections that can be fatal.
CGD is a X-link hereditary disease passed down from the mother because she carries a faulty X chromosome. This means she is a carrier of CGD. Usually only males get X-linked CGD. A male born to a carrier mother has a 50% chance of having CGD. The only known cure at the time of Aaron's diagnosis was to get a Bone Marrow Transplant (BMT). He was entered into the BMT registry in 2007, but due to his rare DNA we have been unable to find a match.
Fast forward 12 years and thanks to major advances in science Aaron now has a chance to get a stem cell transplant from a half matched donor that isn't a carrier! That type of match is called Haploidentical Hematopoietic Stem Cell Transplantation (HSCT). In Aaron's case the half-matched donor will be from me, his father!
Our current plan is to let him finish 8th grade and then start the transplant procedure in June, which takes approximately 4-6 months if successful, but 2020 has not started good for him as he's been hospitalized at NIH since January 6th due to a bacterial growth in one of his lungs that's causing breathing problems and frequent fevers. He's had a PICC line inserted and is being treated at NIH.
Due to his recent brush with health issues we may have to start the transplant earlier than expected. From what has been explained the treatment will be inpatient/outpatient, which will require us to find living accommodations around the Washington D.C. area during that time. Any suggestions for places with short term leases would be great.
Please help support us during this challenging time as we move forward with a potential cure for Aaron.
Respectfully,
Eric & Tangela Barr
Our son, Aaron Barr, was diagnosed with Chronic Gramulatous Disease (CGD) at 17 months in July 2007 after he was hospitalized with a really high fever and swollen lymph nodes in his neck. The doctors performed a biopsy on swollen lymph nodes and diagnosed him with the rare autoimmune disease. He was referred and accepted to a study with National Institutes of Health (NIH) in Bethesda, MD. We have been visiting NIH semi-annually since he was diagnosed and he follows a daily regiment of medication, which helps his body fight bacterial and fungal infections that can be fatal.
CGD is a X-link hereditary disease passed down from the mother because she carries a faulty X chromosome. This means she is a carrier of CGD. Usually only males get X-linked CGD. A male born to a carrier mother has a 50% chance of having CGD. The only known cure at the time of Aaron's diagnosis was to get a Bone Marrow Transplant (BMT). He was entered into the BMT registry in 2007, but due to his rare DNA we have been unable to find a match.
Fast forward 12 years and thanks to major advances in science Aaron now has a chance to get a stem cell transplant from a half matched donor that isn't a carrier! That type of match is called Haploidentical Hematopoietic Stem Cell Transplantation (HSCT). In Aaron's case the half-matched donor will be from me, his father!
Our current plan is to let him finish 8th grade and then start the transplant procedure in June, which takes approximately 4-6 months if successful, but 2020 has not started good for him as he's been hospitalized at NIH since January 6th due to a bacterial growth in one of his lungs that's causing breathing problems and frequent fevers. He's had a PICC line inserted and is being treated at NIH.
Due to his recent brush with health issues we may have to start the transplant earlier than expected. From what has been explained the treatment will be inpatient/outpatient, which will require us to find living accommodations around the Washington D.C. area during that time. Any suggestions for places with short term leases would be great.
Please help support us during this challenging time as we move forward with a potential cure for Aaron.
Respectfully,
Eric & Tangela Barr
Organizer
Eric Barr
Organizer
Simpsonville, SC