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Wednesday, November 19, 2008

Bella's fight to survive Hurlers

A few months ago, a sweet baby from our church named Isabella was diagnosed with Hurler’s Syndrome, a genetic disorder that prevents the body from properly storing mucopolysaccharides. The end result is organ damage, mental retardation from the resulting brain damage and a life expectancy of no more than 10 years. Bella is only 18 months old. That’s the bad news. The good news is that if Bella receives a bone marrow or umbilical cord stem cell transplant before she reaches age 2, much of the damage from Hurler’s can be prevented, Bella can have a greater quality of life and she may actually be able to avoid the brain damage that leads to mental retardation. While it isn’t a cure, a transplant can greatly change the outlook for Bella. Isabella is now in Cinncinnati for weeks of testing, matching and, eventually, her transplant. Bella will begin to undergo chemotherapy on November 20, 2008 (tomorrow) to kill off her entire her immune system: a dangerous procedure due to the risk of infection but it is what is needed to help Isabella’s body to fully accept her new stem cells. Stem cell day (or “miracle day” as many of have named it) is December 12, 2008.
Isabella’s parents have insurance that is covering a large portion of the costs but their out of pocket expenses will still be between 20,000 and 30,000 dollars. The family has been doing all that they can to sell off assets, trying to sell their home, etc to raise the extra funds for Isabella’s care. Our church is doing various fundraisers to help this little family out. One of them is collecting "Pennies for Bella." In addition to just going out and collecting real pennies (and dimes, nickels, and quarters) a website has also been created where you can donate through paypal or even a credit card I think. So, if you would like to donate go here: http://www.penniesforbella.org/
You can read her story there as well and learn a little more about Hurler's. Also, if you are a praying person...please pray for her and her family. Specifically that her body would accept the transplant, that mom and dad would be protected from any illnesses during this time and that she would too. And if you go to penniesforbella, would you consider putting the button on your blog too? Individually our contributions may be small, but together, we can make a big difference. Thank you!
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