Humbling generosity keeping hope alive

Just for a moment, I'd like you to step into Kairit's shoes. One day you are walking in the sand at the beach, playing volleyball and riding a bike. You feel strong, vital, and healthy. Then, slowly, over a brief few months your muscles begin to fail you. The doctors put you through a battery of tests. They don't know what's wrong. One suggests you need to be in a psychiatric hospital because he never heard of such a thing as muscles feeling like popcorn in your body. Another says you are just nervous and need Xanax. You can no longer climb stairs, or walk with your head held high, nor quickly nor far. You can no longer work. The muscles in your hands are weakening, too. You can't brush your hair because you can not hold a brush.You hold a fork and knife like a child holding a tool. Someone needs to cut your food.

You finally find out from the doctor that you have amytrophic lateral sclerosis, or ALS. When you ask what it is, you learn that it's a difficult problem for which there is no cure. And, oh, there's no treatment either.

We need to change this. Several months ago Kairit's sister, Hurmi, reached out to friends and family to help Kairit fund the stem cell implantation therapy she underwent about ten days ago. Kairit lives on a small government stipend for which she is grateful but does not provide any extras. We have learned that people are generous. The family is grateful for all the assistance.

Just today Kairit learned that a very generous Spanish gentleman donated a large sum that will cover all of the medical expenses Kairit incurred at the X-Cell Center not yet paid. Such kindness is overwhelming! It enables Kairit to focus on staying healthy with an eye on the future.

We have skyped this past week. Kairit has not had any noticeable effect yet from the stem cell treatment but she looks and feels well. There is no noticeable deterioration either. Hope is still alive.

We have started a campaign to raise funds for the Los Angeles Chapter of the ALS Association for a symposium to bring together ALS researchers from around the world. There has never been such a gathering.

This year on June 27-28 the ALS Association is holding its first two-day symposium near Sacramento. It will bring together local and regional researchers who no doubt will welcome the face to face time to discuss the data that has amassed on ALS. I so hope it will bring new ideas and help Kairit and others live.

If you would like to donate to the Leek Family Fund and help us make this international symposium a reality, please click here.

Donations earmarked to the Leek Family Fund can also be mailed to the ALS Association at:

ALS Association - Greater Los Angeles Chapter
Attn: Leek Family Fund
28720 Roadside Drive, Suite 200
Agoura Hills, California, USA

On behalf of Kairit and the extended Leek family, thank you.

Note: Videos from our trip to the X-Cell Center in Germany are forthcoming...