I've started to wrap up my story about Michael Ecker and this is a rough edit of the story, so far. I'm going to school with Michael tomorrow and would like to include a photo from that.
Here are things that will be helpful to know about Michael:
1.) Michael has a rare genetic disease, Angelman Syndrome, which causes him to have difficulties with balance, speech (at most people effected by Angelmans learn 5-10 words in their lives)
2.) Michael has a genial disposition and is very loving, his family in turn is very loving and supportive
3.) Michael, like many individuals with Angelman syndrome sleep for a maximum of 5 hours at any one time.
4.)Michael, like others with Angelman, is fascinated by water and has a very sensitive mouth(he puts everything is his mouth and likes to chew on just about anything)
Here are things I haven't figure out:
1.) The sequence
2.) What shots I still need to make the story complete
Friday, May 25, 2012
Wednesday, May 23, 2012
Thursday, May 10, 2012
After meeting Michael and his parents on Tuesday, I left their home and started driving back to the office. About two block into my drive I decided to turn around and see if Michael and Barb would be interested in letting my photograph their family. They were surprised to see me again but excited about about my taking pictures. Yesterday I got to see what it was like to get Michael ready for school. Hopefully in a week I can go to school with Michael.
Tuesday, May 8, 2012
In about a week and a half Michael and his parents will travel to Tampa, FL to participate in the first human study of using an FDA approved antibiotic (tetracycline) to try and help with some of Michael's symptoms.