- T
- N
- S
After 3 years of fertility treatments, on July 13, 2018, Jay and Amanda Luksis transferred their last 2 embryos with the hope that one of them would take. Over the next 9 months they planned for the birth of the girls, but nothing prepared them for what would come next.
March 6, should have been the happiest time for the family with the birth of their twin girls, Addison and Charlotte. Instead, their joy was quickly turned into a journey of overwhelming anxiety and despair. Addison was diagnosed with a congenital heart condition (Truncus Arteriosus) requiring open heart surgery to correct it and a rare genetic disorder (DiGeorge Syndrome) that will be with her for a lifetime.
On March 17, less than two weeks old, Addison coded and required emergency open heart surgery to help relieve some of the pressure the heart defect was putting on her lungs and heart. Jay and Amanda were relieved that Addison made it through the life-saving surgery and at the same time terrified about what was to come. It was a complete shock to find Addison was in such grave condition.
After weeks of ups and downs, Addison was finally healthy enough for her corrective open heart surgery.
On April 4, the 4.5 hour surgery was performed to repair Addison’s tiny heart. The little fighter came through it, but everyone is keeping a cautious eye on her.
As part of Addison's care and final diagnoses, she has undergone numerous tests both to confirm the severity of her DiGeorge Syndrome and see if there are any other conditions. The genetic testing has come back and Addison has a moderate case of DiGeorge Syndrome (DGS). This is something that she and her family will have to deal with for a lifetime.
Addison is now being tested for Leukodystrophy, a genetic brain disorder which is fatal. Leukodystrophy is one of a group of disorders characterized by degeneration of the white matter in the brain.
While her twin sister, Charlotte, has been able to go home and meet her two brothers, Addison has remained in the pediatric intensive care unit desperately fighting for her life. At this point, there are many unknowns about Addison's future needs and how her heart defect and other health problems will affect her daily life.
Jay lost his job just days after Addison's heart surgery. Jay has been actively looking for a job, something made even more difficult when his daughter is in the hospital fighting to get better.
Addison and her family need our help now to relieve some of the mounting financial pressures. Our support will go far in allowing them to continue to focus their efforts on Addison’s recovery.
Let’s do what we can to help them as they face the challenging road ahead.
Please keep them in your prayers and consider sharing their story and our campaign link on social media (Facebook, Instagram, etc.) and with your friends.
Mom (Amanda) first time holding Addison.
Dad (Jay) soothing little Addison.
March 6, should have been the happiest time for the family with the birth of their twin girls, Addison and Charlotte. Instead, their joy was quickly turned into a journey of overwhelming anxiety and despair. Addison was diagnosed with a congenital heart condition (Truncus Arteriosus) requiring open heart surgery to correct it and a rare genetic disorder (DiGeorge Syndrome) that will be with her for a lifetime.
On March 17, less than two weeks old, Addison coded and required emergency open heart surgery to help relieve some of the pressure the heart defect was putting on her lungs and heart. Jay and Amanda were relieved that Addison made it through the life-saving surgery and at the same time terrified about what was to come. It was a complete shock to find Addison was in such grave condition.
After weeks of ups and downs, Addison was finally healthy enough for her corrective open heart surgery.
On April 4, the 4.5 hour surgery was performed to repair Addison’s tiny heart. The little fighter came through it, but everyone is keeping a cautious eye on her.
As part of Addison's care and final diagnoses, she has undergone numerous tests both to confirm the severity of her DiGeorge Syndrome and see if there are any other conditions. The genetic testing has come back and Addison has a moderate case of DiGeorge Syndrome (DGS). This is something that she and her family will have to deal with for a lifetime.
Addison is now being tested for Leukodystrophy, a genetic brain disorder which is fatal. Leukodystrophy is one of a group of disorders characterized by degeneration of the white matter in the brain.
While her twin sister, Charlotte, has been able to go home and meet her two brothers, Addison has remained in the pediatric intensive care unit desperately fighting for her life. At this point, there are many unknowns about Addison's future needs and how her heart defect and other health problems will affect her daily life.
Jay lost his job just days after Addison's heart surgery. Jay has been actively looking for a job, something made even more difficult when his daughter is in the hospital fighting to get better.
Addison and her family need our help now to relieve some of the mounting financial pressures. Our support will go far in allowing them to continue to focus their efforts on Addison’s recovery.
Let’s do what we can to help them as they face the challenging road ahead.
Please keep them in your prayers and consider sharing their story and our campaign link on social media (Facebook, Instagram, etc.) and with your friends.
Mom (Amanda) first time holding Addison.Dad (Jay) soothing little Addison.