They came close last fall, but lost the donor at the last minute and are now back at square one.

"I don't like being sick very much," said 6 year old Kenna. But to fix that, Kenna needs a bone marrow transplant.

She's been fighting Combined Immune Deficiency Syndrome all her young life; she's never gone longer than 7 months without being hospitalized. And for a little girl who loves to be outside and go fishing, that's a big sacrifice.

"I want her to not have to sit inside and look outside at her brothers playing outside," said mom Kimber Emmons. Kimber wants what every mother wants for her children, for them to be happy and healthy. But she also has a more immediate wish. "I want her to make it past ten."

They've been searching for a donor since last August and came so close last Thanksgiving, when 2 weeks from transplant, they lost their donor without an explanation.

"It was horrible, horrid. Like getting her diagnosis all over again," said Kimber. Out of the 12 million people on the international registry, that one match was the closest they've come.

Next week Kenna and Kimber will address members of Congress with ideas on how to get more people on the registry. "(They need to get a) test, for me to get a donor," said Kenna. Kimber has ideas, such as tax breaks and making it a choice when you get your driver license.

"I don't want to label myself an advocate for being on the bone marrow registry, I'm just a mother reaching desperation," said Kimber. Kimber believes a lot of people don't get on the registry because they're afraid the test is painful; but it's not, it's a simple cheek swab.

And as for the transplant, if you happen to match a patient like Kenna, "It's pain or no pain for you, it's life or death for me," said Kimber. And it's all for a little girl who wants nothing more than to go to Disneyland and be a volleyball player when she grows up.

The first 1,000 people to volunteer can join the national donor registry for free. Normally the cost is $52 dollars. The tax deductible fee goes toward tissue-typing to see if you match any patients.

The initial test is completely pain free, just a cheek swab. Officials say the donation procedure itself is not painful because of the anesthesia, but donors will feel pain in their lower back for a few days after.

The "Be the Match Marrowthon" started Monday and runs thru June 22nd. All you have to do is visit http://www.bethematch.org , enter BTMM49 or if you do not have internet you can call 888-748-3494 and they'll send you a test kit in the mail.