A new perspective

I want to take a minute and introduce you to a friend of mine. Her name is Heidi and like me she is raising a child with Rhombencephalosynapsis. She and I met online and have spent the past year getting to know each other. Because she and I have kids with RS we thought it might be beneficial for this blog to share BOTH of our perspectives.

Here is Heidi's introduction:


Hello, My name is Heidi and I am also a mother of a child diagnosed with Rhombencephalosynapsis. His name is Ethan and he will be six in August. My story runs very similar to Kristen's. During my pregnancy (at around 5 months) we found out that our baby had some severe issues. Unfortunately the doctors had no explanation for us.

After Ethan was born life settled into our new normal, and there was alternative for our baby than a “normal” life. He still continues to baffle the docs as to how he is here and how he can be so "normal". Ethan is a fun, witty, energetic boy that gives us a run for our money along with his older brother.

Now that Kristen has a new son in her life I will try to help her keep this blog current as we co-blog about our 2 remarkable children. We hope that by sharing Abby and Ethan’s stories we can raise awareness about life with RS. We are both hoping to give other parents our perspective on raising rhombencephalosynapsis children. Even though both of our children have the same diagnosis and a scary amount of similarity there are still so many differences. No two children are the same!

I feel fortunate to have met Kristen almost a year ago. In that short time we have bonded so instantly due to our miracle kids (even though we have never met!).

I hope to share with you stories of Ethan just as she has shared such wonderful ones of Abby.

You can look forward to Heidi's wonderful stories of her life with Ethan!