Joubert Syndrome

Our new foster son is 6 months old. He is absolutely precious! I have loved every single foster child we have had and each one has a special place in my heart. But every so often one will come along who completely steals my heart. One of those was my daughter, Deanna, whom we later adopted. Dashawn (our new foster son) is another. I don't think I am going to be able to let this one go.

Dashawn has a very rare disorder called Joubert Syndrome. I have been researching JS and there so many medical complications associated with this disorder. Currently, he is on oxygen and an apnea monitor 24 hours a day. He is on a pulse oximeter and a BiPAP at night. And he gets his feedings through a g-tube. How much of this he can grow out of remains to be seen. He is such a precious baby! He smiles and coos and already responds to my voice. He has spent most of his life in the hospital so far but we got to bring him home a few days ago. There are so many new things for him to experience. I can't wait to share each one with him.

If you want to learn more about JS, you can find a lot of information at www.joubertsyndrome.org. Also, if you want to help raise money for the JS Foundation you can do it every time you search the web! Instead of using google, go to www.goodsearch.com. In the box where it asks WHO DO YOU GOODSEARCH FOR? put Joubert Syndrome Foundation and Other Cerebellar Disorders. You only have to enter that the first time. Then everytime you search, money will go to the the foundation! Make this your home page! It's not about what one person can do to make a small difference. It is about what we can do together to make a huge difference!