Dria has currently been inpatient at Seattle Children’s Hospital for over a month now, and there is no timeline for when they may be able to return to their home in Idaho. Please, I ask that you help me support them and share this GoFundMe so that both of her parents can be by her side full-time and we can help to lift any financial burden so that they can focus on being fully present for their daughter.
Alexandria’s mom, Kayla, posts updates about Dria’s condition as often as she can to their Facebook page “DriaStrong” and you can follow along there for future updates. Here is a little bit more about what is going on:
“Alexandria has been fighting Autoimmune Hemolytic Anemia since she was a year old. The autoimmunity is caused by her immune deficiency. Her B cells and T cells (the few she has) have been attacking her blood for 3 years, as if it is a foreign invader in her body. Her immune system is confused and not trained because she was born without a Thymus. The Thymus is what trains your immune cells and teaches them how they are supposed to work. This is why Dria has been waiting over a year for a thymus transplant!
We have kept the autoimmunity controlled for the last 3 years between steroids, cell altering drugs, different immune suppressors & bone marrow stimulators. We have been really, really lucky to control her autoimmunity for as long as we have. Fast forward to today - Alexandria’s body is having a systemic reaction as a result of one of her bone marrow stimulating drugs. This systemic reaction has come in the form of a painful, acute rash. She needs this stimulating drug because it allows her bone marrow to produce neutrophils (a type of white blood cell that leads the immune system’s response - neutrophils are the bodies first line of defense against infection). Her neutrophils are now considering her skin foreign and attacking it and we don’t know why. So now, Dria has an immune system that doesn’t work and confused immune system cells, called clones, that have been attacking her blood and most recently, her skin. Because of this, we are no longer able to support Alexandria’s blood counts with these medications. At this point in time, they are causing more harm than good. What this now means is that her blood is no longer controlled or working as it has been for the past 3 years. Basically, this is what happens when immunodeficiency goes on untreated.
Drias 4th Birthday was on May 1st and we celebrated it in the hospital (our 20th day there since being admitted on the 11th of April). Her immunology and hematology team at Seattle Children’s have started the search for a 10/10 match bone marrow donor, which Dria needs in order to go through with a bone marrow transplant . We are currently caught in between a rock and a hard place. As parents, we are basically being told, “this is what we have to do to save your daughter’s life at this point in time, and we need to kill all of her autoimmune cells.” Alexandria will be going through chemotherapy and receiving someone’s bone marrow at 4 years old to save her life and keep her alive. Here’s the catch... this isn’t even the end all fix. Alexandria will still need a Thymus Transplant to be able to regenerate her own immune cells. We are in a situation right now where her blood is the primary issue and her immune system is secondary. This is Dria’s bridge to be able to go to Thymus Transplant one day. As of right now, we don’t have any sort of timeline for Thymus Transplant. Duke University has stopped accepting new thymus transplant recipients until Fall 2018 which would be the earliest Dria could get in but, it could take years…we don’t know. This will also depend on how well she holds the donor’s immune system. In this moment, with Dria’s current state, we can no longer wait on Duke University like we have been for the last 15 months. Of course we are frustrated, scared, numb and without words. What we do know, is that Alexandria is a miracle and we need to take it one day at a time at this point. We are focusing on what’s in front of us and handling it. We have our faith, family, friends, and virtual support team from coast to coast. Please pray for our family for the days to come, pray for Dria’s potential donor for participating in such a selfless act… an act that will save our child’s life. During this time we ask that you please give myself and AJ our time and space as a family to be able to deal with this as we choose. There isn’t a single book out there that is guiding us or has been guiding us. We have no clue what we are getting ourselves into or the struggle our daughter is about to endure.”
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