Chloe Sophia Barnes was born July 12, 2008 to Philip and Erica Barnes. She appeared happy and healthy, charming everyone with her mischeivous grin and keeping her big sister Eva on her toes. While Eva is deliberate and methodical, Chloe was spontaneous and not afraid of anything, even big slobbery dogs.
But at 18 months Chloe was still struggling to walk and seemed to have unusual pain issues after naps and through the night. By 23 months, following assurances by their pediatricain that everything was fine, Philip and Erica were concerned enough to seek a second opinion. She received an MRI June of 2010 which indicated that her brain was slowly losing myelin, the fat that coats nerves and allows the brain to communicate with the rest of the body. After 2 months of an angonizing wait for a diagnosis, Chloe was diagnosed with MLD. Thanks to the heroic efforts of doctors and specialists, she received a stem cell transplant at the Mayo Clinic in Rochester, MN on October 1, 2010.
After fighting more bravely than someone ten times her age, Chloe died from complications of the transplant and an acceleration of MLD. But we, her family and friends, are determined to continue the fight against MLD. Chloe’s courage was truly and inspiration and those who are making this run happen will not give up until we can add MLD to the list of previously terminal childhood diseases.
Find out more about Chloe’s story on her Caring Bridge site HERE .
Chloe in the news:
The Nokomis Messenger
The Pittsburg Morning Sun