“Our 9 month old granddaughter Charlotte Condon, daughter of Kim O’Kane and Christopher Condon was born with a very rare and severe genetic disorder called Hurler Syndrome or MPS1, in which her body doesn’t produce the enzyme it needs to break down specific sugars. This affects every aspect of Charlotte’s poor little body – literally from her hair to her toes and everything in between, yes everything. Most children with such a severe form don’t live longer than a few years without major, traumatic treatment.
Charlotte was at a birthday party when a pediatrician that was also attending questioned Kim if Charlotte had been tested for MPS. Shortly thereafter the genetic testing was conducted. On May 1st it was confirmed, Charlotte has the most severe form of Hurler. Kim who had already missed many days of work, had to resign from hospice care to be with her daughter.
Fortunately Charlotte was able to begin enzyme treatments but, this does not cross the blood brain barrier so, her brain would continue to be ravaged by the havoc caused by Hurler. The best bet for the neurological issues and chance of survival was for her to get a bone marrow transplant.
On May 12th Charlotte’s hero was found through the donor bank. A selfless, 21 year old Boston man, was found to be a great match. We all are so grateful for this young man’s courage and selflessness to step up to save the life of someone he knows absolutely nothing about.
Charlotte was admitted to Children’s Hospital where she underwent 8 rounds of chemo prior to having the bone marrow transplant on June 9th. She has been in the CICU since June 16, because of complications. This is just the beginning of her battle, she will have a lifetime of issues to deal with such as walking, talking and multiple surgeries.
Please help make some of the burdens and worries that come from having an ill child a little less by making a purchase to show your support. This illness has not only been devastating, emotionally, but financially as well. On top of fighting for what is best for their child, Kim and Chris have to find other living arrangements immediately because their current apartment has mold and is not suitable to raise a child facing the challenges of Charlotte’s condition. As they continue to stand by their daughter to help her reach her maximum potential, we thank you for your support and ask that people continue to pray for Charlotte and her family. We truly believe that prayer is just as an important part in Charlotte’s journey.”
Written by Liz Condon, Charlotte’s grandmother