EDS Exposure

As I said in the last post, the construction of the ramp began last Friday. People from our church, Trinity Episcopal, Hearth Professionals and COTF made everything possible. The door installation, and ramp construction took less than 2 days to complete.

While the construction was going on, a reporter from our local ABC news came out to do a story. His name is Anthony Mirones. He only had 90 seconds of air time to tell the story, but he did a great job in such a short time period. He talked to us for almost 2 hours. While he was here, Erica hurt her ankle and Elizabeth popped out her shoulder. Mr. Mirones did capture us putting her shoulder back. I was worried about this being sensationalized, but he did a great job.

Here is the link to the report:
http://www.wcpo.com/news/local/story/Hamilton-Family-With-Rare-Syndrome-Needs-Help/lSVNreKnuUeL9U5auStDUw.cspx

The reason that the news crew was called out was to raise money for our project which is now called "Hometown Home Makeover", but I think it also brought some awareness to a relatively unknown problem. There was a comment on the news web site that said that she did appreciate the coverage as doctors typically only spend about 15 minutes on EDS in medical school.

The ramp is beautiful! It is fully contained in the garage, thus eliminating the problem of rain or snow. Even the door is specially designed to close automatically and opens very easily.

Erica already has her motorized wheelchair and Elizabeth will have her's soon. The ramp allows them to bring in the chairs on their own.

During all of the construction, I meet with our case worker from the Butler County Board of Developmental Delays. We interviewed companies that provide health care workers to come out to the house to help with the girls. It was total chaos, but productive. We were able to select a company and they will start working with us in a couple of weeks.

Because the girls qualified for this assistance, the Board provides some of the funds for the home modifications. We still need a lot of help with the changes, but things are progressing very quickly.

Hearth and COTF are also looking for volunteers with future phases of the modifications. If you would like to volunteer, please email me at caschulze@cinci.rr.com. Even if you do not have construction experience, we are still in need of people that can help carry and lift and do odd jobs.

Again, thank you for all of your support and prayers. These blessings are amazing! I can't wait to be in a house that is safe for all of us.