Saturday, July 21, 2012

Conner's Story

contributed by Amanda Ballesteros

Conner Ryan Lloyd 1999 - 2012
I would like to share with others the story of my Angel, Conner Ryan Lloyd, in the hope of helping others struggling with Evans Syndrome, and to let them know they are not alone. 

My son was born a healthy 8-pounds 9-ounces on September 12, 1999.  He was a perfect baby and always happy. 

In 2004, our lives changed forever. Conner started to develop bruises almost overnight. Some thought this was a case of abuse, and an investigation was opened. We ended up at Primary Children's Hospital in our hometown of Salt Lake City, Utah. 

After undergoing blood tests, we discovered Conner had ITP. He was given an infusion of IVIg, and I thought everything was going to be OK. 

A few months went by. Conner developed a cough. I took him for a check up, and they found his hemoglobin (red blood) was low. We went straight to the hospital for additional testing. After the bone marrow biopsy came back negative for cancer, we were able to sigh relief. The blood test came back Coombs positive, and the disease rare: Evans Syndrome. 

Conner was in and out of the hospital every couple of months for mostly minor low blood counts, and he always responded quickly with a treatment and prednisone. It was difficult for our family to adjust to hospital stays and treatments, but after a while we adjusted to the situation knowing it would be a chronic illness.  

Eventually we decided to give rituximab a try. Conner went into remission for 8-9 months at a time! My son was actually able to live a normal, healthy boy's life. 

In May 2012, Conner wasn't feeling well. Stomach pains, anemia, and fatigue. We were admitted into the hospital. After 11 blood transfusions, IVIG, 500 mg prednisone, Cellcept, rituximab, and a splenectomy, Conner lost his battle with Evans Syndrome. It was June 8th, 2012. His kidneys were very stressed and not able to release all the toxins from treatments, and his potassium count rose to a level that stopped his heart. 

A parent never prepares themselves enough to lose a child. I honestly did not think Conner would have passed from this disease and its complications of treatment. I don't know if there was another underlying disease that he may have had, but the pain that Conner suffered is now over. May he rest in peace. 

Conner wanted to be a doctor so he could help other kids going through a chronic illness. I believe sharing his story is a way of helping him achieve this goal. He is an amazing, brave, and dearly missed little boy. 

As part of the Evans Syndrome Community Network, I have met some wonderful families in support of raising awareness and promoting research on autoimmune blood diseases including Evans Syndrome. I want to be a part of the support that families and individuals need when suffering from this illness. I want my son's name to always be remembered. Hopefully his story helps another. 

Amanda Ballesteros
Mother of Conner Lloyd 09/12/1999-06/08/2012

Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.

1 comment:

  1. We had a bubble boy that refused to live in a bubble!! R.I.P uncle shawn


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