allison

Allison was born in 1982. She was full term, but weighed only 4 lbs, 2 oz and was 16 inches long. She was a fairly happy baby who didn’t eat well, didn’t sleep well and didn’t grow very much. Initially, doctors predicted she’d catch up. By the time she was 6 months old, she was being sent to specialists to determine why she failed to grow. Her caloric intake was logged and she was measured and weighed daily at home. She was susceptible to ear infections and pneumonia from the start. The main focus of the family was to keep her healthy and “entice her to eat”. She also has mild scoliosis of her spine. At one year of age, she weighed just 12 lbs and was 24”” long. Her shoe size when she started to walk at 14 months of age was just newborn size 0 (now she wears a ladies‘ size 4). She started kindergarten at 35” tall and weighing just 23 lbs. She’s pictured above at the age of 6 with her brother Jonathan who was 1-1/2 years older.

At 2 years of age, she was labeled a Russell-Silver baby. The prognosis was vague for RSS at that time. I was told that there had been only about 50 cases that had been studied – ever. And many of those case studies were incomplete. In addition to sporadic visits to an endocrinologist, Allison was seen by Dr. M. Jenkins and Dr. H. Marcus both of whom tried to find out as much as possible about her condition. There really wasn’t a treatment for the syndrome at all. One small study had suggested that Russell-Silver kids could increase their eventual height by a couple of inches without side effects by modifying their diet. It called for a high protein (lots of meat, beans, & nuts), calorie dense diet supplemented with fiber and fluids (to counteract constipation). I didn’t really know if it would help, but thought it couldn’t hurt. She seemed to like meat the most anyway and fruit the least. Looking back, I think this really may have helped, though I cannot be sure. A factor in her growth may also be that there are a few tall people in the family. When Allison stopped growing at 14 years of age, I tapered her off the diet. She is 26 years old and has grown to 4 feet 9 inches and weighs about 90 lbs. The early prognosis for her adult height was an even 4 feet. She is still fine-featured and dainty, but has lost a lot of the characteristic RSS appearance.

As a baby and young child, people stared at Allison everywhere we went. Sometimes they made rude comments right in front of her. When Allison was about 3 years old, waiting in line with me at a store, one woman standing in the line said to another woman, “There’s something wrong with that baby. Look at how unusual she looks”. Allison heard her and felt uncomfortable.

I picked her up and said to her, “I feel bad for that lady. Someone forgot to teach her some manners. It must be hard to be her age and not have any manners”. I was very concerned about Allison’s self esteem and wanted her to feel as “able” as any one else. I had little foot stools all over the house so she could reach everything she needed without asking for help. One of her teachers said something very wise to Allison when she was 7 or 8. She said “Allison, I’ll bet your brain is your strongest muscle. If you exercise it well, you will make it very strong.” And did she ever.

One of the specialists who diagnosed my child with RSS mentioned her muscle tone and excessive leanness and commented, “She will not be a ballerina or an athlete. She should be encouraged to do things that are not so physical”. Allison was very young, but had heard this comment. On the way home from that appointment, she asked me why the doctor said she could not be a ballerina. I told her the doctor

meant that it might not be as easy for her to be a ballerina as a writer or an artist or something else. She did not like that answer and she insisted on dancing so I allowed her to join a dance class. She danced for 15 years and loved it. She also played on the school soccer team in elementary & middle school. She ran track in high school. She was not a star athlete, but she would not be told that she could not do something. She just worked harder and that extra determination she developed has helped her in many other areas of her life. She earned her bachelor’s degree in Professional Writing in just 3 years and graduated with honors. Ironically, she is very athletic as an adult. She runs,, bycicles, and is competitive. There were a couple of “difficult years” when she was a preteen and young teen. She felt different from everyone else, but I wonder if that is uncommon at all.

In closing, I wanted to share Allison’s story all the way to her current age of 26 years to help other parents. If I had been given a glimpse of what my daughter’s life might be like it would have eased my anxiety. I was frightened because there was an almost total lack of information. When my child was growing up, I never saw photos of anyone with RSS who was older than about 6 years old. I also want to emphatically convey that the child’s self esteem is ultra-important. The focus should be on what they CAN do and not what they cannot do. Look at this young woman. She has RSS and she is accomplished, competent, and beautiful.