Another year and a half down the road.

Nothing much has changed, except that Kristen’s smiles are somewhat fewer and farther between, the constant jerking has become even more relentless, and our reserves are a little more depleted.

Sometimes we go days now between smiles, and smiles are the only way we can still connect. It seems that it is getting closer to the time we will have to say good-bye to our beautiful girl. It’s just that I can’t imagine drawing a breath after she stops breathing, or having any want for air.

It frightens me that our little Lafora family has lost three children in this past year alone, and my heart breaks for their mothers and fathers and others who loved them.

On a brighter note, one of Kristen’s friends from middle school, (now working on her PhD!), has reconnected. She will possibly never know how much her visits, emails, and letters have meant to Kristen. It makes ME realize how much power I have to brighten someone’s world through the smallest act of kindness; and it strengthens my resolve to not allow another opportunity to do so to slip by because I lack faith that it makes any difference. It truly makes all the difference in the world.

Also on a brighter note, I take heart in news from the researchers, especially Dr. Minassian and his group. There have been recent breakthroughs and they are making great strides toward a cure! In mice, they are actually reversing the disease by purging brain cells of the toxic substance that accumulates and ultimately destroys the cells. This means that some of our afflicted children, especially those who are in the relatively early stages of the disease, might be able to live normal lives! The thought of this brings me great hope and joy! But there is still a long way to go and there is no time to waste if any of our precious children are to benefit. Thank you from the bottom of my heart to the researchers – and the donors who make this research possible.

Provided by: Kim Rice