AJ 's Bone Marrow Transplant Fund
Donation protected
Alexander, our little AJ, was born October 12th, 2014 two months early with his twin sister, Emma. His placenta abrupted and his vital signs dropped needing an emergency c-section.
He did very well the first 10 days in the Ridgeview NICU sharing a room with his sister. One day when we came to spend the day with him he was acting very fussy and unhappy and all who know him know this is very different. They tested his blood in three different machines because it was so off no one could believe them. He ended up being taken in an amulance to children's NICU where we were told multiple times he shouldn't even be alive. After a few weeks of resting his intestines and not allowing him to eat we were able to start slowly feeding him an enzyme based formula. He started slowly gaining weight and the Dr's started thinking he may have a cow milk allergy. After 5 weeks at Children's he was discharged home and made it two weeks before he started dropping weight and becoming acidosic again. We were then sent back to Children's NICU for another 4 months. After many tests, picc lines, biopsies, 2 broviacs and a genetics test revealed he has IPEX. A rare chromosomal autoimmune disorder. His body is fighting his intestines and he is not able to absorb his formula to gain nutrients or weight with out lowering his immune system. His skin is also very sensitive and we are not allowed to start any type of foods until after the transplant. Other autoimmune disorders can start so we are trying to get the right timing down. AJ was able to come home March 18th and is taking an anti-rejection medicine to lower his immune system so he is able to absorb his formula. We have to continue to go to Children's to see his immunologist every 3 weeks for labs and a good look over and the weeks in between we have a nurse come out to check on his weight and skin.
We opted to have a bone marrow transplant which is the only cure. They found 8 matches right away. The Dr's want him to gain weight and be stronger so the goal is to transplant mid September and he needs chemo 10 days leading up to it. To transplant we want him older and stronger, but also do it before he develops diabetes, thyroid disorder and other autoimmune disorders. One of us is not allowed to work and needs to stay down in his hospital room the entire time. Once we are able to discharge then we need to go down daily, every other day, etc. Until they are confident he is healthy!
We want to give thanks for all the constant prayers and support we have for AJ and the rest of our family! We will also be having a benefit for AJ at the Mound Legion July 25th from 4-midnight. Feel free to contact us if you have any questions or ideas! Thank you! He is such a smiley happy boy for all he has been through and I can't wait to see him grow up and have a happy life!
He did very well the first 10 days in the Ridgeview NICU sharing a room with his sister. One day when we came to spend the day with him he was acting very fussy and unhappy and all who know him know this is very different. They tested his blood in three different machines because it was so off no one could believe them. He ended up being taken in an amulance to children's NICU where we were told multiple times he shouldn't even be alive. After a few weeks of resting his intestines and not allowing him to eat we were able to start slowly feeding him an enzyme based formula. He started slowly gaining weight and the Dr's started thinking he may have a cow milk allergy. After 5 weeks at Children's he was discharged home and made it two weeks before he started dropping weight and becoming acidosic again. We were then sent back to Children's NICU for another 4 months. After many tests, picc lines, biopsies, 2 broviacs and a genetics test revealed he has IPEX. A rare chromosomal autoimmune disorder. His body is fighting his intestines and he is not able to absorb his formula to gain nutrients or weight with out lowering his immune system. His skin is also very sensitive and we are not allowed to start any type of foods until after the transplant. Other autoimmune disorders can start so we are trying to get the right timing down. AJ was able to come home March 18th and is taking an anti-rejection medicine to lower his immune system so he is able to absorb his formula. We have to continue to go to Children's to see his immunologist every 3 weeks for labs and a good look over and the weeks in between we have a nurse come out to check on his weight and skin.
We opted to have a bone marrow transplant which is the only cure. They found 8 matches right away. The Dr's want him to gain weight and be stronger so the goal is to transplant mid September and he needs chemo 10 days leading up to it. To transplant we want him older and stronger, but also do it before he develops diabetes, thyroid disorder and other autoimmune disorders. One of us is not allowed to work and needs to stay down in his hospital room the entire time. Once we are able to discharge then we need to go down daily, every other day, etc. Until they are confident he is healthy!
We want to give thanks for all the constant prayers and support we have for AJ and the rest of our family! We will also be having a benefit for AJ at the Mound Legion July 25th from 4-midnight. Feel free to contact us if you have any questions or ideas! Thank you! He is such a smiley happy boy for all he has been through and I can't wait to see him grow up and have a happy life!
Organizer
Christena Katherine Loscheider
Organizer
Shorewood, MN
