We’d love an update on how your kiddo is doing!

  • What are the challenges you’re facing this week, or in the coming months?
  • Are you contemplating a procedure, or do you have surgical outcomes to share?
  • How is therapy going? What new things have you tried?
  • Do seizures continue to be a big factor, and how do you cope with them?
  • What games, toys and apps get your child excited about learning?

These are just a few ideas.

We all have so much to learn from each other, and sharing is such an important part of that.

Many of you are super involved on our Facebook page, and that is amazing! We are so happy to hear from you there.

The website remains another important piece of the Wolfhirschhorn.org mission. This is where we can tell stories and chronicle our progress. By name, we can see how children just like ours are coming along, over time.

We have a carrot to dangle! Post an update by April 1, 2017, and we’ll send you a copy of the great children’s picture book, Just Because by Rebecca Elliott.

I’ve recently done a lot of research on picture books to explain my 5-year-old daughter Elsa’s WHS diagnosis to her peers. There isn’t a perfect match, but this book is pretty amazing. Here’s a summary of the book, from my perspective:

Just Because is a story about a boy named Toby and his sister Clemmie.

Clemmie is Toby’s big sister. She can’t walk or talk. But in Toby’s eyes, she is amazing. In fact, she’s a lot like a princess. Clemmie is never mean. She makes sweet sounds and funny faces. She has an awesome wheelchair and big curly hair. Most of all, Clemmie lets Toby be himself, without question or critique. She is his best friend, and he loves her. Just because.

It’s so very sweet and (for this momma) a real tear jerker! I related to it in every way.

Ready to post? If you want to, but can’t remember how, here’s a link to a tutorial.

Can’t wait to read your update!

PS: We plan to do a giveaway for parents of older kids soon. Stay tuned!


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