When a family is challenged to the extreme like we've been, it changes everyone. You're not the same and you'll never be the same. In our opinion, you either take responsibility for your child or you "bail out"!! Well, although it's difficult and overwhelming at times, there's no way as proud parents we could do anything but seek out the best care available. We treat him like any other kid, try to be the best parents we can , and most of all keep the family together.
During Taylor's many stays at UCLA and CHLA, we tried to pay for all of the traveling, lodging, and eating of decent meals on our own. What ended up happening is that we were uninformed about available agencies and supports. We were spending a great deal of money staying in REALLY bad hotels on the Sunset Strip, eating at questionable restaurants, and sleeping in every place from parking garages, lots of hospital waiting rooms, in our cars and even a select window sill when he's in PICU (although, we were fortunate that the Ronald McDonald House of Los Angeles could accommodate our family on occasion).What is so great about the World Craniofacial Foundation (our parent organization), is that they make sure that the families of these children get to stay in nice hotel rooms and eat good healthy meals while their kids are being treated by teams of "Rockstar" doctors. 100% of ALL donations made to the Taylor Wilson Foundation go directly to a special TWF account located in the World Craniofacial Foundation. The TWF and the WCF will work together to pick a suitable family in need. This family will then be awarded a "Taylor Wilson Foundation Grant". These Grants will be used to help defray the costs of travel, food, and lodging while their children receive life changing procedures. Thats it!!! Let the Doctors do their work and with the help of the WCF and the TWF, we'll do ours.....
I would like to send an important message to parents everywhere: When you see a child with a facial difference (or any difference), please teach you child that its not ok to point and stare, but it is ok to ask questions and learn.
