Help kids with cholesteatoma
Donation protected
Earlier this year I started a web site for parents of children with cholesteatoma, after our own child's diagnosis. Cholesteatoma is a middle ear disease, where a non-cancerous growth can ultimately destroy the hearing bones and even get to the brain causing infections such as meningitis. It is difficult to treat fully - the only option is surgery performed by a specialist, and because it grows back, it often requires multiple surgeries.
Kids with cholesteatoma also may lose hearing in one or both ears. While some kids are fortunate and go on to have pretty normal lives, even despite any hearing impact, others experience recurring infections, pain, and activity restrictions which can last a lifetime. Parents have to fight for their children to get the pain treatments they need, to get hearing aids (many insurance plans don't cover hearing aids), and for additional services or assistance in school. Some children with cholesteatoma are fighting multiple health challenges, and for these kids cholesteatoma is just one piece of the puzzle.
There are medical web sites which describe cholesteatoma, but none explained the difficulties a child may experience in school as a result, how to help kids cope with multiple surgeries, or what kinds of hearing aids are ideal for cholesteatoma. This is what I set out to do with the site, as well as to be a clearinghouse of information to keep parents up to date on treatment and research.
There is some research going on to improve surgery techniques, but drug therapies seem unlikely any time soon. The web site has been a good source of information for parents, many of whom are greatly relieved to learn from others who have been down a similar road.
I started the site in late June 2012. I have funded everything out of pocket so far, but I want to continue this resource for parents and their kids into 2013 and beyond. I am seeking donations for day to day expenses, outreach to more families, and to explore creating a foundation for the future. The site is open to visitors from around the world, but is mainly reaching those in the United States, Canada, and UK.
I appreciate your reading this and considering a small contribution. I know I can do more with just a little help from others. You are welcome to take a look at the site as well: http://www.bornwithcholesteatoma.net.
Regards,
Tasha
Organizer
Tasha van Es
Organizer
Pepperell, MA
