tag:blogger.com,1999:blog-3341201475686174354.post237911139253179631..comments2023-10-30T04:40:41.119-07:00Comments on Celebrating Samantha: Fundraising, Vitamins and Percentages....Monicahttp://www.blogger.com/profile/02509440686368691649noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-3341201475686174354.post-57319487475181275022010-11-18T01:44:55.996-08:002010-11-18T01:44:55.996-08:00I would love to know more about the clinical trial...I would love to know more about the clinical trial. What a decision though, 2 months is a long time to be away but you definately cant be traveling back and forth! I hope you make peace with your decision soon.<br />Its disgusting that only 11 million goes to mito research. At a mito conference, it was once said that more money is spent on the "diet of the homeless" than mito research, ugh. Thats a tough thing to hear when your child has a incurable disease. We dont have any idea how Mito has affected our family, as its likely found in the Nuclear genes and we're still waiting for the test to become available. I also feel 14% is a positive thing, but nothing is positive about this diagnoses. We live for today and do our best to bury those statisitics. BUT even with the lack of funding, I feel good about the direction the research is going. At least Im getting a better sense that they are getting closer to a drug that might help our kids. (according to Jacks Mito Dr.) Things have really moved since we first got Jacks diagnoses in 2008. <br />HOPE is all weve got, and seriously, the snuggle fest sounds wonderful! Give her one for me tonight-hugs and prayers for your family and dear Sam.<br />Heidi & Jack.<br /><br />(I had to laugh about the chocolate bars, thats SO me! I never felt comfortable to allow our kids to beg the neighbors/co-workers for $)Heidihttps://www.blogger.com/profile/02241152139861621622noreply@blogger.com