A few months ago a precious little girl from my old church 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.
Thursday, November 20, 2008
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 avoid the brain damage that causes mental retardation. While it isn't a cure, a transplant can greatly change the outlook for Bella.
Isabella is now in Cincinnati for weeks of testing, matching and her eventual transplant. Bella will begin to undergo chemotherapy treatment today (November 20, 2008) to kill off her entire immune system: a dangerous procedure due to risk of infection, but it is what is needed to help Bella's body to fully accept her new stem cells. Stem cell day (or "miracle day" as many have called it) is December 12, 2008.
Isabella's parents have health insurance that is covering a large portion of the costs but their out of pocket expenses are still going to be between 20,000 and 30,000 dollars. The family has been doing all they can to sell off assets, trying to sell their home, etc. to raise the extra funds for Bella's care. Their church is doing various fundraisers to help this precious little family out. One of them is collecting "Pennies for Bella". In addition to just going out and collecting real pennies (and nickels and dimes and quarters), a website has been created where people can donate through Paypal. If you would like to donate visit: www.penniesforbella.org. You can read about this family's journey and learn more about Hurler's.
Also, if you are a praying person... please pray for Bella and her family. Specifically that her body would accept the transplant, that her mom and dad would be protected from illness during this time and that Bella would too.