Community rallies for child with dwarfism

Rachel Weston occasionally walks to her child’s sleeping form, places her hand on her daughter’s tiny chest and checks to see if she is still breathing.

It’s a practice not uncommon for many young mothers, but Weston and her husband Brian have more to fear. Their 2-year-old daughter Violet likely has a rare form of dwarfism called Russell-Silver Syndrome and blood sugar so low it causes her to slip into comas.

“RSS is rare and there is not a definitive test for it,” Weston said. “It’s sometimes labeled as failure to thrive.”

RSS, first described in 1953 by the two doctors for which it was named, is characterized by children of short stature and too small for gestational age. It’s also associated with an increased risk of delayed development and learning disabilities.

Violet was born in April 2007 and weighed only 8 pounds one year later. She was 16 months old when she learned to crawl and was 22 months old when she took her first steps.

“She would eat, but she would not gain weight,” Weston said. “Nothing I did would make her grow.”

At age 1, Violet was skin and bones and was hospitalized with blood sugar irregularities. If having a sick child wasn’t enough, the young Williams mother suffered the glares of people in public. Child Protective Services paid her a visit after neighbors reported the child as neglected.

“I was devastated,” Weston said. “They thought I was starving my child. I would say, ‘Look at my other children. They are healthy and happy.’”

In her first year of life, Weston took Violet to see doctors at the University of California at San Francisco, who surgically inserted a feeding tube through which Violet could be fed nutrient-rich formula. Violet gained 8 pounds the first month.

“I was so happy,” Weston said. “I thought she was finally going to grow.”

Hormonal problem

But RSS, unlike some “failure to thrive” disorders, is a growth hormone problem, not a calorie problem, Weston learned. While aggressive feeding allowed Weston to combat Violet’s malnutrition, the weight gain was mostly fat and did nothing to improve the growth of Violet’s tiny bones and muscles. The feeding tube, however, is still used to regulate feeding to control Violet’s low blood sugar, and her condition is complicated by vision problems and delayed learning.

 Weston said she did a lot of research on the Internet and attended the Magic Foundation conference in Illinois last year to learn as much as she could about what doctors by then suspected was RSS.

And while life with Violet is a joy, Weston said she has trouble finding doctors who completely understand the condition. Most guess that at the rate Violet is growing, she will stand just over 4 1/2 feet when she reaches adulthood.

Although the family has an adequate income from Brian Weston’s construction work, the unexpected expense of a sick child is devastating, Weston said. State Medi-Cal helps the family with Violet’s care, but does not pay for travel and treatment out-of-state. Weston is leaving for New York with Violet in early July to see Dr. Madeleine Harbison, the country’s leading specialist on RSS.

Weston said Colusa County residents have rallied for Violet’s treatment in New York by donating recyclable materials. Weston has multiple barrels set up in businesses in Colusa and Williams for recyclable  aluminum cans and plastics. Charity Baptist Church hosted a spaghetti feed and Kittle’s Outdoor Sport Co. has been raffling guns.

“The community has been so supportive,” Weston said. “It’s wonderful. That is the essence of a rural area. I don’t think you get that kind of support in a large city where nobody knows you.”

To donate to Violet’s medical care, drop off any recyclable material that bears a California redemption stamp at select locations or call 473-3369.

Contact Susan Meeker at 458-2121 or smeeker@tcnpress.com.