Tuesday, May 29, 2012

Editing for a story

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












Monday, May 28, 2012

Friday, May 25, 2012

Evening with the Eckers



Michael and his family returned from their trip down to Florida and last night I got to photograph what it's like getting Michael ready for bed. A fascination with water is often associated with Angelman Syndrome, so I was trying to find a way to show that, luckily Michael needed a bath. I've never seen anymore as excited about a bath as Michael. Another challenge that Michael and his parents have is that Michael's mouth is very sensitive, making toothbrushing very difficult. It's a two person job. Next week I get to go to school with Michael.

Wednesday, May 23, 2012

Stanley Pawlowski

Stanley Pawlowski turned 91 and served in World War 2, Korea, and Vietnam through the navy. It was a pretty incredible hour the writer and I spent listening to his experiences.

Here are two portraits I took of him that I like.



Thursday, May 17, 2012

Tuesday, May 15, 2012

Thursday, May 10, 2012

Getting ready to go to school

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

Michael

This is 8 year old Michael Ecker. Michael was born with a rare genetic disease called Angelman Syndrome. People with Angelman Syndrome have difficulty with balance and some only learn to master 5-10 words in their lifetime. Michael has never spoken. Another characteristic of the disease is a happy-go-lucky demeanor and frequent laughter. his mother Barb said, "Through it all, all of the challenges and obstacles, he's a really loving boy and that's the silver-lining."  

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.

Monday, May 7, 2012

Another photo from my weekend in Erie




My friend Sarah got married this past weekend and luckily for her and her husband almost everyone there brought camera. Not only did they have a hired photographer but a bunch of shutter happy friends and family as well.



Sideline fun



Tuesday, May 1, 2012