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Archive for the ‘Kiddos’ Category

You, too…

Posted in Boston, Energy for Life, Friends, Hope, Hope Rising, Keith, Kiddos, mito, Monthly Dose of Hope, Raising Awareness, umdf on 28 September 2010| 1 Comment »

Last weekend, I helped put on a patient education meeting for the mito community. The meeting was incredibly productive and I am so incredibly grateful and blessed to have had some amazing friends to help us put it together. In preparation for the meeting, I put together a montage video with a song on my good friend Stefani Bush’s upcoming album, Hope Rising. Hope Rising will be released in November. If you’d like to order a copy, let me know!

The majority of the pictures were given to me over a the last few months to support the efforts of UMDF; others were taken at UMDF-sponsored events. I’m very grateful to all of those who shared with us. We hope the video inspires people to not live only to become victims of the disease. Rather, we hope you’ll join us in our efforts and on our journey. Because you, too, can be part of the cure. For more, please visit umdf.org.

PS I forgot to add one of my pictures on my last blog. Take a look!

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Part of the Cure

Posted in Boston, Canobie, Friends, Hope, Hospital life, Kiddos, Legislation, mito, Raising Awareness, Six Flags, Tutoring on 24 September 2010| 2 Comments »

Sometimes when dealing with something as ugly as mitochondrial disease, it can be difficult to keep the focus on the good and the cure, rather than the sick and the disease. For this reason, I feel incredibly lucky and blessed to have such an amazing support network of friends and family. Even through the bad, they are able to keep a smile on my face and laughter in my belly. They are able to remind me not to focus on the disease, but rather they push me to fight for the cure, to become part of the cure.

This week is Mitochondrial Disease Awareness Week. But rather than tell you more about the disease – I think I’ve do a pretty good job for the mito-illiterate – I want to share with you all the good and amazing things I am blessed to have in my life. Because living with mito is not just about living with the disease, it’s about living.

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Visiting Friends and a Friendly Visitor

Posted in At the Doctor's, Boston, Friends, Hospital life, Kiddos, Sleep, Tutoring on 9 September 2010| 2 Comments »

First, I apologize for the delay in updates. It’s been a hectic week!

Last Friday, I had a routine neurology appointment at the Brigham. Not too much transpired, but the meeting confirmed that I am in need of a new neurologist. After the appointment, I rewarded myself with a visit to a couple of my friends over at Children’s. We try to visit my good friend Eithene whenever we’re in the area. As I’ve mentioned before, Eithene has been hospitalized most of her four years. While we were at Children’s, we also visited Eithene’s good friend Matthew. Matthew was in for an ileostomy to help with his chronic intestinal pseudo obstruction. We brought them some goodie bags packed with books and zoobles – an interesting toy that I had never heard of before Matthew professed his desire for some. We had a wonderful time visiting with our friends (and, of course, their parents!) before we were off to pick up Keith’s brother from the airport!

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