Another Year in Holland: Life as a Parent of a Child with PCDH19

The decorations are put away, the ball has dropped, kids are heading back to school and parents around the world are officially starting another year in Holland. I’ve never actually been to Holland but I’ve lived there for the past four years. Holland is the country of parents of children with special needs. In 1987, Emily Perl Kingsley wrote a poem titled Welcome to Holland that described her life as a mom to a child with special needs. She said it was like taking off

January 9th, 2017|0 Comments

On Becoming an Epilepsy Advocate

Years ago, when we were just starting on our journey with PCDH19, someone suggested that I work to raise awareness about epilepsy and Alyssa’s condition. At that point in my life, I was pretty mad at the world and I found suggestion that I become an advocate infuriating. I was fully aware of how this disorder was destroying our lives and stealing my child. I saw no point in making others more aware of our tragedy.  More people clicking like on a Facebook photo wouldn’t

November 3rd, 2016|0 Comments

Dear Parent: It’s OK to be where you are.

  When my daughter received her diagnosis of PCDH19, I fell apart.  I had days when I couldn’t get out of bed and times when the grief seemed overwhelming.  I write about this now because at the time I thought that I was alone.  I looked at the special needs moms that I knew, or the ones I saw online, and I was convinced that they were all superwomen. They were out and about raising awareness or changing laws. They seemed to juggle the endless

September 29th, 2016|0 Comments

Preparing for another (school) year with epilepsy

Preparing for another (school) year with epilepsy: Five tips to make this your best year yet By Le Shepard In the next few weeks, many of our kids will be heading off to school. This can be a stressful time for any family but especially so when you have a child with special needs. We have all heard horror stories, and some of you may have even lived them, about the IEPs that are not followed and schools who do not provide the education our kids deserve.

August 9th, 2016|0 Comments

2016 PCDH19 Epilepsy Symposium

Welcome to the 2016 PCDH19 Epilepsy Professional & Family Symposium.  We know that not every family facing PCDH19 Epilepsy is able to join us in San Francisco this weekend.  The best way to keep up with the conference from afar is to watch the sessions online.  The second best way to learn about the newest breakthroughs is to follow along here. I’ll be live blogging and summarizing the points that stick out to me as a parent.  I’m not a medical doctor so please don’t

June 4th, 2016|12 Comments