Tuesday, October 1, 2013

Gilchrist Kids

Having a child brings happiness and challenges, having a child with special needs brings happiness and different challenges, having a child with a life threatening disease brings yet more happiness and different challenges...we have faced many of these over the years. When Ian came home from the hospital, in March, we started with many new services, one of them being Gilchrist Kids. Their goal is to help any child "live well" during their last days (regardless of how many days that is) and to provide their loved ones with the support they need during their most difficult time. By providing relief from physical, emotional, social, and spiritual suffering, they enhance the quality of life for seriously ill children and their families. 

Back in January/February, when we were deciding to trache or not to trache, Brian and I said we did not want Ian to just lay around being hooked up to a machine. With the help of Gilchrist and everyone else in our village, we are making many more memories along our journey. 

This article was in the Gilchrist 2013 Year in Review which was just released. 

Below is the article for easier reading:

By the time Ian Scher came home from a 10-week hospital stay in March, he had lost most of the use of his limbs and was dependent on a ventilator to help him breathe. But that didn't mean he'd lost the desire to be as typical a 10-year-old boy as he could.

Within a month, he was back at school and finding new ways to do all of the things that a rare degenerative neuromuscular condition had robbed him of doing.

Instead of pressing the buttons on his video games, he directed others, including his Gilchrist Kids volunteer and Child Life Specialist. He built Lego sets using the hands of family and friends for the actual construction - after he'd figured out where to put the pieces. 

As summer rolled around, he found himself with almost as packed a schedule as his twin sister, Becca. He went to several camps, including a sleepover camp for medically fragile children. And on August 17, he threw out the first pitch at a Baltimore Orioles game; his father, Brian, was with him on the field to make the actual throw.

Through it all, his parents, Marci and Brian, have relied on the support and guidance of the Gilchrist Kids team to help keep Ian out of the hospital and to help them talk through important decisions about his care. Ultimately, watching Ian continue to be able to do the things he loves is validation that they have made the right choices in his care.

"Ian wants to do as much as possible. We know he's still getting a lot of joy."
Brian Scher, Ian's father


Amy Marie said...

It's so nice to see Ian being able to be so involved. He's such a sweet boy and a source of inspiration for me and I know many others as well. Give him my love.

Amy Leber

Anonymous said...

Amy Eisenberg Samay Did Lisa Goldberg Burgunder write this article? (Great article, even if she didn't.)

Marci Weinberg Scher Yes. Amy she did.

Charles R Hentz hugs and kisses.

Harry Blacker Nice articles. Our thoughts and prayers go out to Ian and the family. Love to all!!