COTA for Emmy's Journey

Our Story

Emerson “Emmy” Brûlé is a 10-year-old girl who was diagnosed with Aplastic Anemia on December 4, 2020.  On December 1, 2020, Emmy was taken to the doctor because she was pale and her energy level appeared low.  Emmy’s pediatrician ordered labs to get blood samples and sent Emmy home.  Around 7:30 that evening, we received a call from Emmy’s pediatrician.  He reported results on Emmy’s labs and then asked which hospital we would prefer for future care: Madison or Chicago?  After discussing it for a few minutes, we decided American Family Children Hospital at the University of Madison would be our choice.  During our discussion, we assumed this would lead us to making an appointment with a specialist a couple of weeks down the road.  We were surprised by the following comment from Emmy’s pediatrician: “Please take her to Swedish American Hospital right now to stabilize her, then they will transport her to Madison.”  The feeling we got in our heart and stomach were indescribable.  We were now faced with the task of telling our baby that she had to go to the hospital because she was functioning on only one third of her normal blood level.  Our other two kids were a little panicked as well, because their little sister was sick and none of us knew to what extent.  

Once we arrived at American Children Family Hospital in Madison, we were brought to the hematology/oncology department.  We are no doctors, but we understood that we were in the part of the hospital that specialized in blood and cancer.   Emmy required an immediate blood transfusion, followed by a platelet transfusion.  In addition to blood and platelet transfusions, Emerson was subjected to many tests in order to determine the reason for her low blood counts. The doctors came daily during their rounds to update us on Emmy’s condition.  At one point, they asked Emmy if she understood the information being shared.  She was a little confused so we explained to her that she was at the hospital so the doctors could stabilize her condition and find out why her blood levels were low.  From there, she would have to fight.  Stabilize – Diagnose – Kick Butt.  This story was shared with family friends and, from there, Emmy’s motto came about: Wake up – Kick Butt – Repeat.   On December 4, 2020, Emerson was diagnosed with Aplastic Anemia.  This was a general diagnosis as the doctors still needed to determine if the Aplastic Anemia was inherited or acquired.  

As we were waiting for the specific diagnosis, Emmy had to get her blood drawn bi-weekly to measure her blood counts.  When her blood counts were low, we drove up to the Children’s Hospital to receive blood or platelet transfusions.

On January 6, we officially found out that Parker, Emmy’s older brother, was a perfect match for a bone marrow transplant.  On Tuesday, January 12, we received confirmation that Emmy’s Aplastic Anemia was acquired.  Emerson will be admitted in the hospital on January 22, 2021, to begin the conditioning phase of her treatment.  On January 28, 2021, Parker will join Emmy so the doctors can retrieve his bone marrow and transplant it into Emmy’s body. Emmy is expected to stay in the hospital for 4 weeks during her transplant, followed by another 3 weeks in a nearby hotel so she can get immediate care if necessary.

Emerson is a vibrant young lady full of energy.  She enjoys school enough to want to be a teacher when she is older.  However, since December 1st, she added doctor to the possible list of future professions.  Emmy is crafty and loves to paint; she also travels for basketball and softball.  However, Emmy’s favorite thing to do is to play around in the pool with her sister and friends.  She might be shy at first glance, but once she warms up to the group, you will notice her presence by her contagious laugh.  

There is a long road ahead for Emmy with many challenges.  However, with the grace of God, your prayers and your support, she will kick butt.  Our family has felt your presence and support since we were presented with this challenge.  There are no words to express our gratitude.  We feel your love and know that we will never walk alone through this journey.  

                                  The Brûlé Family,

Patrick, Heather, Parker, Avery and Emerson (#fighter)

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.