Those of you who visited DifferentDream.com yesterday met our special guest, Jill Kelly, when she shared the story of their son, Hunter. Hunter was diagnosed with Krabbe Disease as an infant and died from the condition at age seven. In today’s question and answer session, Jill explains how her family continues to advocate for children with special needs.

How are you involved in the special needs community now?

We have both a national and local presence. We do fundraising through Kellys for Kids, which is a global organization. Hunter’s Hope Foundation holds an annual medical symposium. During the four day conference, families come from all over the world to gain in-depth information about leukodystrophies, learn about the latest developments in scientific research and medical care, identify available resources, and develop support systems. We minister personally to those families when they are there. On a local level, we are active throughout western New York state. We join families as they fund raise, meet with kids at school. Hands-on love is a great blessing.

Erin and Camyrn have a ministry for tween girls. The first book in their Hot Chocolate with God series was released in September of 2011, and tweens can visit their website at www.hotchocolatewithgod.com.

What can churches, schools, friends, family, and the medical community do to better support parents of kids with special needs?

My advice is that people listen to parents. They are special needs advocates and very busy caregivers. They speak up only when the need is pressing. If they come to you, it is important. So listen because parents want listeners. I also encourage people to get involved with families. Live beyond yourself and get to know families and children. Once you leave your comfort zone, you will be blessed. And of course, pray for families.

Tell us about your books.

Without a Word is a memoir of life with Hunter. My prayer books are taken from my journals. They are raw and real, and God uses them with parents who are struggling with God. Prayers of Hope for the Brokenhearted comes from a season of confusion. Prayers for Those Who Grieve was written after our season of grief. My new book, Etched on My Heart: What We Learn and Why We Never Forget goes deeper into the moments when God reveals himself, even when we aren’t aware. It will be released in January of 2013.

Thanks to Jill Kelly

Thank you, Jill Kelly, for visiting DifferentDream.com and for sharing Hunter’s story with us. I was encouraged by what you shared and hope others did, too. Readers, leave a comment about how Jill and Hunter’s story touched your heart or changed your outlook. She would love to hear from you!

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