Get Ready To Hemi Jam!
- on November 29, 2013
The third annual Hemi Jam, which benefits children and families suffering from radical brain surgery, is planned for Saturday, December 7th at The Granada Theatre in downtown Lawrence, KS. Doors open at 7pm.
All proceeds from the Hemi Jam directly benefit The Hemispherectomy Foundation. The Hemi-foundation is an all-volunteer organization that supports children and families who are impacted by hemispherectomy brain surgery. This radical brain surgery is used as a last resort to stop uncontrollable seizures. One side of a child's brain is removed and disconnected with the hope that by removing this damaged side, the child has a hope of living a life seizure free. These children are on high doses of very strong medication, which come with damaging developmental side effects. This surgery gives families hope that these children can wean off these meds and live a life seizure free.
The Hemi-foundation offers families a network of support, both financially and
emotionally. This foundation is run completely by volunteers and helps approximately
1000 families in all 50 states and 45 countries around the world. Connecting and
supporting these families provides hope that life for their child can be bearable after a
surgery as invasive as a hemispherectomy.
Last year, the Hemi Jam was a great success and received rave reviews from those that
attended. The Hemi Foundation has been very impressed with the support from the Lawrence
community and chose Lawrence as the location for it's annual conference this past summer.
Previous years' conferences have been held in Baltimore, Los Angeles and Indianapolis.
I spoke to The events organizers Dan and Saasha Huston of Lawrence about their son Gibson who had two surgeries for this rare but very serious life threatening condition. They told me “When Gibson had his Hemispherectomy, The Hemi Foundation did not exist. We know first hand how important both emotional and financial support are to a family who is searching for answers to help save their child. Lucky for us, we live in a wonderful community like Lawrence, KS and we had people we knew and even those that we didn't supporting us through the experience. We feel blessed to be in a position to give back and assist other families who are going through the same thing. The Hemi Foundation was started in 2008 and we hold very close ties with this community. When a new family makes contact with the foundation they receive a phone call from a hemi family that same day. Within moments that family is linked to other families that are in the area so that they can meet another child who shares their diagnosis and has been through the surgery. Seeing life after surgery, often a better life, one without seizures is invaluable. But this is only part of what the foundation does. The Hemi Foundation also funds research to find cures to the conditions that lead to this surgery"..
I’ve known Dan Huston for a while, and have had the pleasure of meeting Gibson (who LOVES to dress like Elvis). Dan and I can both relate to having a sick kid. My daughter was born with a heart defect, and had open-heart surgery at 6 months. We can relate to the time spent in silence as your sedated child sleeps, hoping that they will wake up and be alright. We can relate to countless vitals taken in the hospital at all hours, by what seems like an army of nurses. We can relate to doctor’s appointments, and follow ups, and medication, and everything that goes with caring for a kid that has very special needs. I was lucky, I only had to camp out in Kansas City at Childrens Mercy for two weeks. Dan, Saasha and eventually Gibson had to travel to Baltimore and Southern California for their surgeries. The best news out of all of this is both kids are okay, Gibson had not have a seizure since his last surgery on 2010. That is something to be thankful for.
This year's Hemi Jam is expected to be even better with a very talented lineup of local bands. Lisa Donnelly, Revelation: A Tribute to Journey and The Band that Saved the World are the music headliners. This diverse music lineup will satisfy different musical tastes and will certainly keep toes tapping, fingers snapping and bodies grooving all night long. It also marks a trip home for Lisa Donnelly who grew up in Lawrence and is now a well established singer in LA and San Francisco. The night will also feature both silent and live auctions, and one lucky person will win an authentic New Belgium Brewing Fat Tire bike.
For more information about this benefit or to make a donation visit www.hemijam.org or visit the "Hemi Jam" cause page on Face book.