Friday, February 10, 2012

Just a brief update....

Samantha continues to get better following her bout with RSV a few weeks ago. Sammy is still on her vent at night and also getting her overnight tube feeds.  We feel the combination seems to have brought back some of her spunk that she was missing a month or so ago.  She is toddling more and seems to have more energy than she had about a month ago.

While Val and I are upset that we won't be removing the trach anytime soon, we are very happy that adding back in those two things seems to be helping again. And of course, Samantha continues to take EPI-743 which we feel is doing wonders for her.

Until next time,



  1. so glad to hear that things are better.

  2. Hy, we are Dimkovski family, our Nina(4years)has leigh disease complex 4 deficiency and she is very affected with the disease that started when she was 1 year old, our son Darin (1year)has the same genetic mutation, we live in germany and we are fighting to get EPI-743 here because we can not travel, Dr.Miller aproved epi trial for us but now we are waiting our doctors to arrange things with edison, we can not wait to get epi, Nina has improved last 2 months a little and i think it is from idebenone,the sintetic coenzim q10, that is way we hope that epi will have some effect on her too,can you tell us more about the epi effects and how samantha is doing, you can also read more about us on our blog
    Lots of love
    Tanja, Nina, Darin and Blasko