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We all need support from others.

There were many things that I loved at the second day of the LGS Foundation Conference in Orlando.   There were thought provoking presentations on various topics including LGS research, new drug therapies, surgical options, devices, plus genetics and precision medicine.   We had a great banquet and dance.  It was a wonderful day.

I took a picture of Nick in front of one of the most profound experiences I had today.  It was a small project each of the conference attendees were invited to participate in.  On the first day the board was black and one by one conference attendees were given magnets to take home.  In the white space left after the magnet was removed, we were asked to write in the name or names of someone who had been extremely supportive on our journey raising our child with LGS.  My magnet was removed and the lower section of the ‘r’ in power was revealed.

Reading the names of the various people written on the board is inspirational.  The entire saying on the board is “the power to change a life is in each of us.”

Contemplating this concept was the profound thing.  I thought of therapists, doctors, friends, and neighbors in addition to family members, teachers, school employees, work colleagues and caregivers.  The list in my head is very long.

I am grateful for everyone who has been helpful to us over the past 38 years as we have raised and cared for Nick.  Today I learned of a program sponsored by LGS Together called Change Agent.  Starting in January, we in the LGS community will have the opportunity to nominate someone who has been a supporter of our LGS family.  A Change Agent is a person whose help or kindness has made a difference to our family.  What an amazing idea.  I asked if I could nominate more than one person and the wonderful answer was yes.

I realized today that we don’t all need an organized Change Agent program to decide to recognize the people we know who have helped lift our spirits or made our life more positive.  Take up this challenge, even if you don’t have a family member affected by Lennox-Gastaut Syndrome.  Decide that you are going to honor and recognize those people who have been Change Agents in your own life.  We can change the world, one sincere ‘Thank You’ at a time.

Please share this blog if it resonates with you or you know someone who might benefit from it.  If you want to get a copy of the book as soon as it is available, click here to sign up.

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Announcing that I have finished a book with the working title of “The Fairy Fort.” I am currently pitching it to publishers. Keep checking back to watch the progress of my newest novel.

Here is a quick glimpse of the story.

Sarah Doherty is an 18-year-old living in rural Ireland at the tail end of the Great War. Plagued by severe epilepsy, she is protected by her parents and lives a sheltered, secluded, lonely life. The Fae, local Irish fairies, interfere with her life. She falls forward a century in time through the local fairy fort of standing stones. She had a seizure in 1918 and woke up in 2020. The 21st century world includes life-saving prescriptions, physical comforts and the independence and freedom she seeks. The locals are welcoming and Andy Mclaughlin, a handsome young historian, is intriguing. She doesn’t want to return home.

Then a letter arrives from Boston divulging the story of Sarah and Andy’s lives that are deeply entwined in the previous century. They are not yet in love but as they seek to verify the letter through online resources, they feel a growing obligation to their unborn family and to each other. What would happen to their posterity living in Boston if they don’t return to 1918? Even if they do make it back, her parents can never know what happened to her or that would change everything.

This Young Adult time-travel romance explores the question: Do we have the freedom to make choices or is free will an elaborate illusion?

This is my third book. I love reading time travel romances. I am an advocate for epilepsy awareness because my 43-year-old son has intractable epilepsy. As a genealogist specializing in Irish research, I live part of the year in the village where the story is based. I wrote the book to help young adults understand that difficult situations can change your life. Sometimes miraculously.