Dreams

When I became a parent it amazed me that I was entrusted to care for this little child. I am in awe of his potential and feel responsible for helping him read that potential - which is frankly, quite daunting. One night, Doug and I discussed the hopes and dreams we have for our Benjamin. It was a thoughtful, spiritual, and moving experience, mostly because I don't think I had realized how much I already loved him. And when you love someone, you want the world for them.

I read about another Ben - Ben Siedman - whose story comes close to home. I'm sure in Ben's early life, his mom had similar thoughts as I did, though now I can imagine her thoughts have evolved. Her Ben was diagnosed with Sanfilippo Syndrome at 15 months.

In this video, Noah, Ben's brother, says "I really wish my brother would sorta be normal." That hurts my heart. Of course he wants Ben to be normal. Ben's family has established a foundation, the Sanfilippo Research Foundation to increase awareness and raise money for research. They have been remarkably successful thus far as stated on their website:

Success in fundraising this year could help researchers meet their goal of a human clinical trial and pave the way for a healthy future for thousands of children afflicted with genetic disorders.

You can help them with fundraising by voting for them on Facebook here through the Chase Community Giving Program.

I sincerely think this foundation can do a lot of good with their research. Ben's story touched me on multiple levels and I just feel fortunate that I heard about him today.