When Emma-Leigh Savage was born four years ago next month, she weighed two pounds and seven ounces.

She wasn't breathing when she was born at the University of Maryland Medical Center and needed to be resuscitated.

No one expected her to live more than two days.


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Four years later, Emma-Leigh stands about the height of a small 2-year-old and weighs just 21 pounds, a body weight comparable to a healthy 1-year-old.

Emma-Leigh has a condition called Russell-Silver Syndrome — a rare form of dwarfism that impacts about one child in every 100,000 births.

Because she suffers from the chronic gastrointestinal issues and the seeming inability to detect when she is hungry that plague many children with Russell-Silver Syndrome, she is dependent on a feeding tube in her stomach 20 hours per day that she carries around in a small backpack.

To help her catch up to other children her age, she receives daily injections of growthhormone.

Several months ago, Kendall Savage learned her daughter fell into a category shared by only 30 percent of children with Russell-Silver Syndrome, in which they do not carry either of the genetic indicators known to contribute to the condition.

Savage said an endocrinologist from France who was involved in that study, Irene Netchine, will discuss the results during the Magic Foundation for Children's Growth's annual convention in Chicago July 14.

A single mother, Savage is trying to raise the remaining $600 of the $1,600 she needs to take her daughter to this year's convention.

"I cannot miss this," said the 24-year-old Violetville resident.

The convention provides educational opportunities for families combating childhood growth disorders such as Russell-Silver Syndrome and gives kids like Emma-Leigh a chance to play with other children who face similar health problems.

Savage attended her first Magic convention in 2008, just one month after Emma-Leigh was diagnosed.

She returned the next year, allowing Emma-Leigh to participate in a medical study looking at the genetic causes of the syndrome.

She couldn't afford to attend last year.

But with Emma-Leigh, who currently attends a medical daycare, set to start pre-school in the fall, Savage said the conference will help her learn how to prepare her daughter for the future.

"There's so much to know about this," she said. "She has so many other issues because of the RSS that come along with it."

Sharing success

Missouri resident Dayna Carney, RSS division consultant and a parent volunteer with the Magic Foundation, described the conference as "life-changing."