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 on your dream trip to Italy and then being dumped in Holland instead. Eventually you learn to see the beauty where you are, but you always grieve the Italy you dreamed of. Thirty years later that poem is still one of the first

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 save my little girl and I honestly didn’t see how it would benefit our lives. Community Support I found the Alliance website and Facebook group the day after we got the phone call with Alyssa’s diagnosis of PCDH19. I held back

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 appointments with ease and never melt down about the challenges of this life. I was nothing like the people I thought they were. Over the past two years, I have learned a few things. First of all, when I got to know the super parents, I realized that t

Preparing for another (school) year with epilepsy: Five tips to make this your best year yet

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. We also know that there are great teachers out there who are dedicated to making sure our kids succeed. It is easy to feel overwhelmed by uncertainty about the care your child will be receiving at school this year. As we count down to the first day of school, here are five tips to making this the best year yet for your child at school with epil

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 consider anything I write to be medical advice but I’ll do my best to keep you updated as the day progresses. Bookmark this page and check back throughout the weekend. Welcome and Introduction by Joseph E. Sullivan, MD I am so

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The PCDH19 Alliance is a registered non-profit by the Internal Revenue Service under Section 501 (c)(3). We are 100% volunteer run. All the funds we raise go directly to funding research, supporting families, raising awareness, and finding a cure.

Copyright 2019 PCDH19 Alliance

926 A #212 Diablo Ave, Novato, CA 94947

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