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Even So, Joy

Weaving a Brighter Blueprint for Advocacy, Legacy, and Life.

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Tori’s Bucket List: Feed Giraffes

September 5, 2015September 5, 2015 · 1 Comment ·

Thanks to our cousin Louise, we got a behind-the-scenes experience with the giraffes at the Cape May Zoo! She called the Zoo and told them about Tori, and they were … Continue reading Tori’s Bucket List: Feed Giraffes

Leukodystrophy Awareness Month – Day Five

Image · September 5, 2015September 1, 2015 · Leave a comment ·

Leukodystrophy Awareness Month – Day Four

Image · September 4, 2015September 1, 2015 · Leave a comment ·

Leukodystrophy Awareness Month – Day Three

Image · September 3, 2015September 1, 2015 · Leave a comment ·

Leukodystrophy Awareness Month – Day Two

September 2, 2015September 2, 2015 · Leave a comment ·

Tori’s First Birthday Party (Six Weeks Later)

September 1, 2015September 1, 2015 · Leave a comment ·

On July 25, we celebrated Tori’s first birthday (a few days early). I realized recently that I hadn’t blogged any of the amazing photos from Katie Bingaman for those who aren’t … Continue reading Tori’s First Birthday Party (Six Weeks Later)

Leukodystrophy Awareness Month – Day One

September 1, 2015September 1, 2015 · Leave a comment ·

September is both Leukodystrophy and Newborn Screening awareness month! Krabbe and the other leukodystrophies are so rare that most are unaware of them. Let’s change that this month. Each day … Continue reading Leukodystrophy Awareness Month – Day One

Pittsburgh, Round Three: Day Two

August 27, 2015 · 1 Comment ·

Today was a very busy day and we are all so tired.  We started with Tori’s vision and physical therapy evaluations at Dr. Escolar’s office.       We then ran … Continue reading Pittsburgh, Round Three: Day Two

Pittsburgh, Round Three: Day One

August 26, 2015 · 1 Comment ·

We traveled back to Pittsburgh last night for our third visit to Dr. Escolar and her clinic. Such a beautiful sky!         We arrived at our hotel around 9:45pm, and … Continue reading Pittsburgh, Round Three: Day One

Tori’s Bucket List: See Giraffes (Pittsburgh Zoo Edition)

August 26, 2015August 30, 2015 · 3 Comments ·

Thanks to the Children’s Hospital, Jeanine Pittman,  Molly Howard, and Tracy Gray, we had a wonderful visit to the Pittsburgh Zoo! Tracy organized a special experience for Tori where she … Continue reading Tori’s Bucket List: See Giraffes (Pittsburgh Zoo Edition)

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