Immediately after we learned that our son may have Retinoblastoma, we were sent to the Wills Eye Hospital in Philadelphia. We drove seven hours to a city we had never been to. Hotel rooms were non-existent due to a biotech convention that was in town. We finally called the Ronald McDonald house in Philadelphia, and it turned out to be an experience we will never forget. They took us in, and from the beginning, we were treated like family. There were never any questions about what we could afford to pay, or if we could pay. The volunteers were extremely gracious. We constantly got calls from the staff asking how our son was doing, and how we, the parents were holding up. We were offered counseling, spiritual guidance, and just someone to talk to. We did not have to worry about meals, things to do for the kids, or safety. If anyone is looking for a charity to donate to, or volunteer at, we will alwayssuggest Ronald McDonald House Charities. We would not have gotten through the week without their help and support. If you are interested in the amazing work they do, here is a link to the home page:
Maria from LensShoppers.com informed us that there is a great, interactive explanation of the human eye on their website. It is one of the best we have seen, and we thank her for allowing us to post a link here:
Pub Med is a service provided by the National Library of Medicine, and was a major resource for us as we looked for information and/or treatments. This information is only intended to help you research Coats' disease and the treatment options available. We have not spoken to any of the authors, and we are not attempting to suggest a course of action for any child.
This is a link to a 10 year study of the effectiveness of photocoagulation (laser treatment) to seal the leaking blood vessels in Coats' patients.
This link is to a Pub Med article that talks about a benefits of using a high-density vitreous substitute in the management of advanced Coats' disease. The vitreous in our son's eye was replaced with silicon oil in Sept. of 2005
This is a link to a Pub Med article that talks about the urgent need for treatment once leukokoria is present. (Leukocoria is an abnormal pupillary light reflection that usually results from an intraocular abnormality. One-half of the cases of childhood leukokoria are caused by Retinoblastoma, a rare cancer of the eye.)