Here are a few photo’s I wanted to highlight and let you know I had the opportunity to talk with a few of my Batten Disease scientists celebrities!  Here in blue is  Dr. Jonathan Mink and his crew from the University of Rochester, NY. They met with many families at the 2017 BDSRA Family

BDSRA Family Support Conference July 6-9, 2017. Thank you to Our Promise to Nicholas donors, sponsors and volunteers for your support at our events over the year. Part of the money we raised at our events goes toward this nursing care at the summer Batten Disease family conference. The kids

  Today this photo came up on my FB page to post. I have a love + hate for this photo. When I remember  the time it was taken. There was the sting of Nicholas’ rapid decline in his health. Today there is not a day that goes by that I would love to

Happy New Year! 9th Annual Easter Egg Hunt Festival Saturday April 15, 2017 NH Sportsplex - 68 Technology Drive, Bedford NH 8:30AM -12:00PM For Tickets and Sponsorship please go to the button on this web site that says Donate via QGiv, Then click on EVENTS Tickets on line- $8.00 per person

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We were called. We were called/invited for Nicholas to participate into the phase I gene therapy trial in NYC but were given a two week notice. When Chris told me the news my stomach burned and I filled with anxiety.  This could be Nicholas’s only chance to live.  This is what

Below are 5 letters that I wrote to family and Friends while we were going through our journey in NYC. I thought I would share them on my web site. If you want a more detail and more pictures of day by day of our journey in NYC read September post

Nicholas had a busy summer. Here are some more pictures from time at the Red Sox! He continues with PT, OT, Speech, Horseback riding and Massage every week. Never a dull moment here! Here are a few pictures from the summer. Thank you Laura Pace for setting this all up for