Wednesday, May 26, 2010
When I first started thinking about having a baby, I joined one of those "trying to have a baby" message boards. Around 100 of us or so really bonded, and we created our own private forum. I never in a million years imagined "meeting" friends this way, but let me tell you, each one of these women are amazing. One of these women is Sarah. Sarah had a wonderful pregnancy and couldn't wait to meet her baby girl, Lillian. When the day came for her to be born, everyone was anxious to hear about her delivery and see pictures of her beautiful baby girl. However, once Lillian was born, the doctors knew something wasn't quite right. Sure she was perfect and beautiful, but Lillian lacked certain developmental qualities that babies should have. After spending extra time in the hospital, and undergoing several tests, it was discovered that Lillian had Prader Willi Syndrome.
Now you're asking what is Prader-Willi Syndrome, or PWS? PWS is the most common known genetic cause of life-threatening obesity in children. Although the cause is complex it results from an abnormality on the 15th chromosome. PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia which can lead to a diagnosis of failure to thrive. The second stage (“thriving too well”), has a typical onset between the ages of two and five, but can be later. The hyperphagia (extreme unsatisfied drive to consume food) lasts throughout the lifetime. Children with PWS have sweet and loving personalities, but this phase is also characterized by increased appetite, weight control issues, and motor development delays along with some behavior problems and unique medical issues.
The problem is, PWS is so unrecognized, and not many people are aware of this condition. Two of the ladies from my "mom board" are running a 10K to help raise awareness and funds in honor of Lillian. Now, I normally don't post things like this, but I have come to know Lillian through my friendship with Sarah. Lillian is such a doll and a very special little girl. Sarah is an amazing Mommy and is doing everything in her power to give Lillian the most normal life she can possibly have.
If you would like to make a donation, please click the adorable picture of Lillian at the top of my post. And, if you want to know more about Lillian and her family, visit Falling for Baby