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Even So, Joy

The Musings of Lesa Brackbill

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The Brackbills

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What we write about…

Being Uncomfortable Blessings Book Review Camping Child Loss Choosing Joy Church COVID-19 Death Death and Dying Decisions Discipleship Dr. Escolar Dreams Even So Joy Faith Family Finish Year Fishing Friendship Frugality Goals God Grace Gratitude Hannah's Law HB730 Healing Heaven Hershey Hope House Projects Hunter's Hope Inauguration Intentionality Joy Krabbe Krabbe Awareness Lessons Learned Leukodystrophy Life Love Marriage Memories Ministry Missions Motherhood Moving Music Nature Newborn Screening Parenting Partisanship Peace Pennsylvania Photography Pittsburgh Politics Prayer Pregnancy Pregnancy & Parenting After Loss Racing SB983 Start Thankfulness Thanksgiving The Twins Tori Tori's Bucket List Traveling Trust Truth Winter Wisdom Youth Ministry

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Things We’ve Said…

Instagram

Being a junior houseparent is exhausting 😍 (Caleb)
I have a story about Facebook Marketplace to share that I didn’t think would end well.
Enjoying some peace for a little while tonight while Brennan took the boys out ❤️
Perfect day for some outside time! #BrackbillTwins
#BrackbillTwins

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Book Review: The Secret to Happiness

May 24, 2023 · Leave a comment ·

The Secret to Happiness by Suzanne Woods Fisher is the second in her Cape Cod Creamery series. I had enjoyed the first book in this series so I was excited … Continue reading Book Review: The Secret to Happiness

InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues

May 22, 2023May 22, 2023 · Leave a comment ·

In early March I was interviewed by InvestigateTV after speaking with reporter Joce Sherman on the phone a few months earlier. She came to our home, where I thankfully was … Continue reading InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues

Public Comments to the ACHDNC about their Decision to not add Krabbe Disease to the RUSP

May 4, 2023May 15, 2023 · 3 Comments ·

Good afternoon. My name is Lesa Brackbill and my daughter, Victoria, died from Krabbe Disease in 2016. I can assure you that I speak today from more than just the … Continue reading Public Comments to the ACHDNC about their Decision to not add Krabbe Disease to the RUSP

Out of Control

March 28, 2023 · Leave a comment ·

Yesterday was the seventh anniversary of Tori’s death, caused by something we couldn’t stop or control. Yesterday, three sets of parents lost their children to something they couldn’t stop or … Continue reading Out of Control

Book Review: The Sound of Light by Sarah Sundin

March 6, 2023 · Leave a comment ·

From the back of the book: When the Germans march into Denmark, Baron Henrik Ahlefeldt exchanges his nobility for anonymity, assuming a new identity so he can secretly row messages … Continue reading Book Review: The Sound of Light by Sarah Sundin

Our Visit to Forge Biologics

February 14, 2023 · Leave a comment ·

This weekend, our family traveled to Columbus, Ohio in order to visit and present to Forge Biologics – the incredible company with a promising gene therapy for Krabbe Disease in … Continue reading Our Visit to Forge Biologics

Speechless (and a little angry) at the ACHDNC

February 14, 2023February 14, 2023 · 1 Comment ·

The ACHDNC decided to not recommend that Krabbe Disease be added to the federal RUSP on Thursday and I’m angry.

There are Education Problems to Solve in Pennsylvania

January 31, 2023 · 2 Comments ·

One of the most incredible things that came from stepping out of partisanship has been the ability to look at issues with a fresh perspective, without party rhetoric ringing in … Continue reading There are Education Problems to Solve in Pennsylvania

Book Review: Everything is Just Beginning

January 30, 2023January 30, 2023 · Leave a comment ·

This is my second Erin Bartels book and it won’t be my last. Everything is Just Beginning is a marvelous story that weaves together relatable situations, historical events, and music … Continue reading Book Review: Everything is Just Beginning

Book Review: Grace in the Gray

January 29, 2023 · 1 Comment ·

It’s no secret that I have been practicing the art of “listening to understand” for a couple of years now. So, when an opportunity arose to review the book “Grace … Continue reading Book Review: Grace in the Gray

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