In March of 2013, and at only just 4 months old, EmmaDavies developed a sudden high fever and a continuous ear infection that was unexplainable to not only her parents, but to several doctors as well. After several trips to the emergency room at Grand View Hospital, her condition worsened and now needed the expertise of CHOP. Emmawas then immediately transported to the Children's Hospital of Philadelphia. It was here they learned that her ear infection caused a burst eardrum and that then resulted in permanent hearing loss for Emma. However, her tiny body wasn't fighting the high fever that had accompanied the ear infection and it was taking a heavy toll on Emma.
After several weeks of tests, blood work, visits with specialists, and stays at Children’s Hospital in Philadelphia, the news came to Emma's parents Jeremy and Lisa.
Emma was diagnosed with Severe Congenital Neutropenia. Her particular condition is so rare that it occurs in only 2 out of a million people.
Severe Congenital Neutropenia (SCN) is a rare hematological disease characterized by a selective decrease in circulating neutrophils, bone marrow maturation arrest at the promyelocyte stage, and occurrence of infections. In other words, Emma's body cannot fight any infections the way other children can and she is prone to recurrent infections. Children with this condition have a shortage (deficiency) of neutrophils, a type of white blood cell that plays a role in inflammation and in fighting infection. The deficiency of neutrophils, called neutropenia, is apparent at birth or soon afterward.
Approximately 20 percent of those with severe congenital neutropenia will develop cancer of the blood-forming tissue (leukemia) or a disease of the blood and bone marrow (myelodysplastic syndrome) during adolescence.
After almost a year of daily injections, weekly blood tests, and nearly 20 overnight stays at CHOP, Emma's overall prognosis was not improving, but rather it was getting worse. Jeremy and Lisa, along with their team at CHOP, had to make the decision to attempt a bone marrow transplant in an effort to halt the deterioration of Emma's immune system. Soon the search was on for a suitable donor.
Within just a few weeks, and in miraculous fashion as only God can do, a donor was identified…Emma’s big sister Lilly.
In April 2014, CHOP will be guiding Emma, Lilly, Jeremy, and Lisa through the bone marrow transplant journey that starts with 10 days of intense Chemo where Emma will be hospitalized at CHOP followed by the bone marrow transplant surgery…with Lilly’s help.
Once the transplant is complete, Emma will remain at CHOP for up to 8 additional weeks followed by weekly visits to CHOP for another 52 weeks.
There are obvious risks for Emma such as her body’s rejection to the transplant but with the hand of God watching over both Emma and Lilly, we are all praying for success and ultimately a cure for Emma.
Please pray for their entire family and consider helping in any way you feel you can. The emotional toll as well as the financial burden this has had, and will continue to have, on their family is enormous and we are looking to support them in any way we can.
On behalf of all of us who love and care for this loving family, we thank you very much for your support and prayers.