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Chester County Press

Oxford family reaches out for help with their ill son

03/26/2015 11:57AM ● By J. Chambless
Milledge Estes

 Melanie Sisemore and Erich Estes of Oxford are reaching out to get critical help for their son, 7-year-old Milledge Estes, who needs a bone marrow transplant.
They are working through the Children’s Organ Transplant Association to seek donations to help pay for the estimated $35,000 cost of the transplant, which is scheduled in April at Children's Hospital of Philadelphia.
Milledge was born with Diamond Blackfan Anemia, and was diagnosed at six weeks old. It is a rare, life-threatening condition in which a child’s bone marrow does not produce red blood cells. Milledge has received more than 100 blood transfusions and nightly infusions of a medication that prevents him from going into organ failure. Currently, the only cure is a bone marrow transplant.
There is a Facebook page about Milledge, and in a March 21 blog post, Melanie Sisemore gave an update on her son's story.
"Milledge was born on September 13, 2007, and before his birth, I’d never heard of Diamond Blackfan Anemia," Sisemore wrote. "A doctor noticed that he was pale at birth, and though he was full-term and my pregnancy uneventful, he was immediately transferred to the NICU, where he received his first blood transfusion as I lay in recovery. Five days later, his father and I found ourselves meeting with a hematologist at the Children’s Hospital of Philadelphia, and at six weeks old, after many more blood transfusions, Milledge was diagnosed, making us part of a tiny but close knit community of families affected by DBA.
"Since then, Milledge has continued to receive blood transfusions, and we’ve trialed other treatments for DBA. None have worked ... This winter, we met with Milledge’s doctors, gathered second opinions, and made the difficult decision to pursue a bone marrow transplant.
"On March 9, I received the call that a date had been set for transplant in mid-April, and we met with Milledge’s doctor to sign the consents shortly thereafter. On Wednesday, April 1, Milledge will receive his last pre-transplant blood transfusion (but it won’t be his last transfusion ever -- expect frequent transfusions while we wait for him to engraft). ... The anticipated date that he'll receive his new stem cells is April 24th! 
"So you may be wondering how Milledge has taken the news," Sisemore continued. "Overall, he’s doing really well. His doctor started the conversation in mid-March, and most of the concerns and questions he had were expected. He worried that he would be in pain, and Dr. Olson discussed how Milledge would be in control of his pain management. He was frightened of losing his hair, and we explained it would grow back, with Grammy offering to knit him an awesome hat. Otherwise, he seems excited and anxious for transplant day to arrive. I think what we have working for us right now is the fact that Milledge is not afraid of hospitals, which is often not the case with other children. Milledge has spent his entire life at CHOP, and the fabulous nurses, doctors, social workers, and Child Life specialists there have done an outstanding job.
"When his hematology nurse asked him what he thought of the transplant, his response was, 'I think it will be good. It’s going to turn DBA into a good thing!' I like that, and I’m going to try to carry that attitude with me through the next few months."
Deborah Maroko of the Children's Organ Transplant Association said, "The family and friends of Milledge want to encourage everyone to check out his website, follow his journey, and hopefully join us as we hold events over the next several months. One hundred percent of the money raised will assist with transplant-related expenses.”
For more information about future events, or fundraising and volunteer opportunities, e-mail [email protected] Updated information is posted at The Children’s Organ Transplant Association is a national charity based in Bloomington, Ind., that is dedicated to organizing and guiding communities in raising funds for transplant-related expenses.  
To contact Staff Writer John Chambless, e-mail [email protected]