We are presently walking through a very difficult episode with our son Max.  He is in an extremely deep hibernation. As always it is so heart wrenching to see him suffer.  This is his ninth episode since he began last December.

This morning I met with our ESE coordinator at the high school where I teach. Carol is awesome and the best ESE coordinator in our district…..  as I wept in her arms I left her office with a new determination.

I am writing to see if any of you would be interested in possibly exploring the possibility of somehow organizing a national workshop to meet other families around the country with children with KLS.  This would enable us to learn from one another and form a support group, be trained on how to advocate for our children in the school system, learn how to advocate within our communities where we live as well as get media coverage to spread the word to the medical community as well as school administrators, teachers, guidance counselors, district level nurses, pyschologists etc., fund raising ideas for research, workshops for our children to meet others with KLS….and on the list could continue.  Support groups are excellent tools to help encourage one another.

I realize all of our lives are extremely busy and that our children’s cycles are unpredictable.  I do know that I tell my high school students all the time that “knowledge is power” and you must be tenacious to go forward to achieve your dreams no matter what obstacles you may face.  We all are keenly aware that our children have a new stumbling block ....but it does not mean that their dreams have to be stolen. We cannot give up and can learn so much from one another.

Raising money for further research is a critical piece for the sake of all our children and other families who walked through the parade of doctors and unecssary tests, scans, drugs etc.

I have no idea how this could come about…but if there is enough interest that will be the beginning. 

I wish you all the best and am in great hope that we can all begin to consider a way to make this happen.

Gail in Florida

I would do what I could to help.

I am very interested in this, I would love to meet or talk with other kids with kls, I am 17 and dont know anyone who can understand what I mean when I try to explain what it is like to have kls. How can we help?

Hi Jessa,
My name is Alanna. I’m 19 and have KLS. I’d be happy to chat with you. You can email me at .(JavaScript must be enabled to view this email address)

The national gathering is a great idea!

This topic has come up in recent board meetings.  The Foundation is looking to further knowledge sharing and improving the existing support network.  The biggest obstacle that we saw was the time and cost of having a nationwide gathering.  However, we thought initially we could facilitate some regional gatherings as we currently have board members in the northeast, southern and western US.  Any thoughts on timing, format or content would be greatly appreciated.

I think a summertime thing would be good due to those still in school.  I know most people here are older but there are some school aged kids (like mine anyway) would would enjoy meeting people “like him” but find it hard due to his schooling.  He misses enough school as it is with his issues so the least amount of time missed,  the better.  I do think the regional thing would be a lot easier to do than a national one (Even though that would be totally awesome)  I’d love to help set something up if anyone wants to help out.  I am in California.

I would definitely love to participate in something like this. I live in the northwest, northern Idaho to be exact. I need support, because my son has KLS. Although, not yet diagnosed, I am trying to learn everything about it.

This sounds good.  I don’t know of anyone my age (35) who has the disease.  In fact I do not know anyone who has it.  I would like to assist in getting the word out and in fact I am slowly brainstorming my own campaign for info, support, fund raising as KLS is so much more than KLS with me.

I am greatly interested in this as well and would love to meet others and I am sure my daughter, nicole, whom has the KLS would love to also. We are in the Western PA area.

Also, if someone could get me more info on the Annual KLS brbeque in S. Carolina i would GREATLY appreciate it. i am really interested in that as well.

Vicki
Mom of Nicole, KLS patient since age 6