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

Impromptu Pet Therapy

  Ben met Doodle today. One of the staff at his day program brought him in. Ben loves dogs and these photos made my day. 

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: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru