Skip to main content

eSpecially Parents: Michele's Story

Michele sent this to me last week. She is one of the eSpecially Parents writers and you can catch up on her story here.

Check this out... It's about extremely rare disease research at NIH. It was aired last night on 60 Minutes. It was so strange seeing Ethan's doctors and the hospital we go to on TV!!!

This is basically a lot of what we go through... The teenage boy has an inflammatory disease similar to Ethan.

 60 Minutes

* When I posted this a few minutes ago, I had not seen this clip. Just watched it and learned a lot about how NIH works, the people involved and the resources available. It was worth the 12 minutes.

Comments

  1. Somehow I happened across this blog, and read the story. I hope it lets you know there's a comment!
    I admire you for sticking with the search for an effective treatment. Ethan sounds like such a trooper.

    ReplyDelete

Post a Comment

Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.

Popular posts from this blog

Parenting an Adult Child with Disabilities

  "Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence

Parenting an Adult Child with Disabilities: From Group Home Placement to Discharge

  Last August, we moved Ben into an alternative family living (AFL) placement, about 90 minutes from our home in Charlotte. It was a three-bedroom house and Ben was given the largest bedroom with its own bathroom.  A typical AFL in North Carolina operates like this: a person with disabilities, the client, moves in with another family, couple or an individual. The client lives in the family’s home and the family receives payment in return for housing, feeding and caring for the client.  Ben’s AFL was unusual: A couple with extensive caregiving experience wanted to run a three-bed group home but needed to apply for the license through the state. They were willing to take Ben as the first resident in a house, separate from the one they lived in. The plan, according to the couple, was to get approval for the group home within a couple of months.  We ordered Ben a double bed, headboard, 54-inch television, new sheets, towels and blankets. Friends helped us move him in....
  Ben is thriving in his group home in Charlotte. I wrote about what he's been up to in this story in Southpark Magazine:  Givers: All together Happy Holidays! Photo Credit Grant Baldwin Photography