My baby was whimpering, she was covered in blood from head to toe, her arms, legs, chest, diaper, and sheets were all saturated in blood. Her hair was matted with blood, her eyelids were sealed shut with dried blood, even her mouth was filled with blood. It was a scene from a nightmare or a horror movie; something straight out of a Stephen King novel, only this was real…"       
   (Read the rest of the Jefferson Award speech)

Families Facing Rare Disease Unite

Rare Diseases Are Rarely Researched
"There's not a lot of research being done. It's terrible to tell them nobody is doing anything," said Mary Dunkle, vice president of communications at NORD.

Because there is lilttle research into these diseases, most of them do not have a drug that is approved specifically to treat them.

Recently, Putkowski and Dunkle said there has been a small bit of hope. In 2008, the National Institutes of Health opened an undiagnosed diseases program.

"They get about 20 different physicians together representing a variety of medical specialty areas," said Dunkle. "As a team they try to figure out what's going on with the patient."   (Read More...)

IN THE HOUSE OF REPRESENTATIVES

February 25, 2008

Mr. Broun of Georgia (for himself, Mr. Burgess, Mr. Boustany, Mr. Price of Georgia, Mr. Paul, Mr. Westmoreland, Mr. Snyder, Mr. Linder, Mr. Gingrey, Mrs. Christensen, Mr. Deal of Georgia, and Mr. Kagen) submitted the following resolution; (Read More)

Make A Wish
White House Visit

A 9-year-old Evans girl with a rare blood disorder had a dream fulfilled recently when the Make a Wish Foundation granted her the chance to meet President Bush and tour the White House.

Julia Smith says she wants to be president one day and her greatest wish was to meet the commander-in-chief and visit 1600 Pennsylvania Ave.

(Read more or View Photos)

Pakistani television interview with Tooba about living with GT:
Kiran Aur George: Tooba (Part 1)

Tooba's TV Inverview Part 2

Tooba's TV Inverview Part 3

Mrs. Smith goes to Washington
Lucy Adams
Columnist

No doubt, the gentleman wondered what Mrs. Smith was doing in the private, men's lavatory in the White House China Room. No doubt, her unexpected intrusion made him very, very uncomfortable. No doubt, he suspected espionage, terrorism, or, worse, that she wanted to use the stall he currently occupied.
(Read More)

TV 26 Interview with Helen Smith about upcoming 'Make-A-Wish' Trip:

A Mother's Definition

I've been asked to write a brief description of what it is like being the mother of a child with Glanzmann's Thrombasthenia. I don't know if it's possible to be brief but I will attempt it. I have 3 children; my oldest daughter is 11, my son is 4. Julia is the baby; she's 3. Julia was born with a rare bleeding disorder called Glanzmann's Thrombasthenia.
(Read More)

Mom starts nonprofit to fight disease
By Charmain Z. Brackett
Correspondent

Helen Smith never thought she'd champion a cause until her daughter, Julia, was born.
(Read More)

Mother hopes her efforts lead to
cure for disorder
By Charmain Z. Brackett | Correspondent
Wednesday, February 1, 2006

Julia, 7, has a rare blood disorder called Glanzmann's thrombasthenia. Mrs. Smith, through the Glanzmann's Research Foundation, a nonprofit organization she founded, helps raise money for research to find a cure.
(Read More)

Columbia County Girl Meets President!
By Trent Butler
Story Published: Sep 18, 2007 at 9:55 AM EDT 

Just like any other third grader, Julia Smith spends part of the afternoon in the kitchen finishing her homework.   (Read More)