Warburg Micro syndrome

As he said goodbye, it hit me. A son returning to college. It’s a common occurrence. But when James, my younger son, leaned over and said “See you in a couple months,” to my daughter and other son, MaryEllen and Kevin, I began to wonder. What must it feel like for MaryEllen and Kevin to [...]

When MaryEllen and Kevin were babies, we were always told that their lives would be short — less than two years — so since then, birthdays in our house are a big deal. We celebrate each and every one fully. This week, MaryEllen turned 29, and I don’t think we will ever be able to [...]

A young woman’s 29th birthday became all the more special on Thursday thanks to a few sales associates at a Macy’s in Lake Grove, New York. Lori Burke took her son and daughter, MaryEllen, both of whom have an extremely rare genetic disorder called Warburg Micro syndrome, shopping for MaryEllen’s birthday. An employee named Thea immediately approached the trio [...]

It wasn’t long after my children, MaryEllen and Kevin, were born that we got the devastating news. Their condition, although unknown, was probably going to be life limiting. Their lack of development, coupled with seizures and failure to thrive, led doctors to believe that whatever the kids had, it wasn’t good. My heart was broken. [...]

Joy Behar and Michelle Collins, co-hosts of “The View,” recently caused a stir with their comments about Kelley Johnson, a registered nurse and the Miss Colorado contestant in The Miss America Pageant. (You can watch a YouTube clip of the show here.) This is for you, Joy Behar and Michelle Collins. Let me enlighten you about [...]

“Did I hear that correctly?” I thought. I turned the television volume up and paid attention. “So, these toys would be appropriate for blind children?” I did hear correctly. Astonished, I sat down and watched. It was December 1989. Between “Sesame Street” and Nickelodeon, and diapers and bottles, I always tried to get my “Live! [...]

Do siblings of children with special needs turn out OK? I’ve asked myself that question many times in the last 28 years. In our family, there’s certainly enough love to go around, but do Katie and James, our healthy children, feel slighted and left out? Will they move far away as adults to get away [...]

Dear New Parents, Hi! Nice to meet you. Welcome to the club! I’ve been here for almost 30 years. Although you never planned on joining, we welcome you with love, empathy and a heartfelt hug. Any thoughts or feelings you may have, we probably understand. On this journey you might lose friends, but here you [...]

I’ve always imagined our healthy kids would have such a connection to their siblings, they’d want to dedicate their lives to helping people like them. “He’ll be a doctor because of MaryEllen and Kevin!” “She’s going to discover the cure!” That’s what always happens, right? We provide the loving foundation, and our kids magically want [...]

After seeing at least 100 doctors for my kids in the last 28 years, there are two things that stand out: the really good ones and the really bad ones. Please, if you are a doctor and reading this, know that your patients (and their parents) live with their disease 24 hours a day. They [...]