Chloe Sophia Barnes was born July 12, 2008. She is a happy, spontaneous girl who loves to make people laugh. While her older sister is quieter and more methodical, Chloe is impulsive and pretty much not afraid of anything. She loves water, petting big dogs, and putting anything on her head and calling it a “hat”.
But at 18 months Chloe was still not walking and her parents Philip and Erica noticed some other odd things. Chloe would often wake up in the middle of the night and cry as if in pain for long periods of time. She also seemed stiff and sore after naps. Chloe’s pediatrician dismissed the concerns since Chloe appeared to be fine cognitively and told the Barnes’ she was just “delayed” in her gross motor skills. This sent them through a few months of physical therapy and braces for Chloe. All the while, their concerns continued to grow. Chloe appeared to become fatigued with too much exercise and continued to appear frustrated with not being able to walk.
Finally, Erica and Philip sought a second opinion from a well-respected MD at the Minneapolis Children’s Hospital. After the visit he ordered an immediate MRI which showed damage in Chloe’s occipital-parietal lobe of the brain. Chloe was losing myelin, the covering on neurons that is responsible for sending all the body’s messages. After a consult with a local neurologist, Chloe was sent to Mayo where she was diagnosed with metachromatic leukodystrophy. Metachromatic leukodystrophy is an extremely rare genetic disease which causes slow degeneration of the brain. Children slowly lose physical and mental functions. Most children with this disease (when it begins so early) do not live past the age of 5.
But Chloe has hope. Very recently doctors have been performing stem cell transplants on these children and have seen some successes. Chloe’s neurologist at Mayo told the Barnes’s that she has never caught a child so early in the disease process and thinks that with an immediate transplant she may be able to stop the disease’s progress. There is no complete cure, but Dr. Renaud thinks that a transplant may stop the disease from doing any more damage to Chloe.
The road will be very difficult and painful for Chloe. The transplant itself will cause Chloe to have no immune system for awhile and she will have to have a feeding tube, be in protective isolation, and have heavy doses of chemo for 1-2 months. But Chloe is a fighter. Already the whole Mayo transplant team is amazed by how healthy and alert she is. Please help Chloe fight this disease so she can dance and run someday and have a long, happy life.
Family and friends will have a booth at the Girard Fall Festival on October 9. There will be hand knit and crochet items as well as baked goods. You can also donate to the Chloe Barnes' Fund at Girard National Bank.
No comments:
Post a Comment