She Will Amaze You

To our dear Friends and Family,
Our journey with Ellie has not been without its share of challenges. Until this week, we waited patiently for an answer to everything we've been through. From my pregnancy complications, to Ellie's early arrival, her lengthy NICU stay, and ongoing feeding and tone issues. Today, we finally received our long awaited answer.
Ellie has Prader-Willi Syndrome.
PWS is a rare genetic disorder, affecting somewhere between 1 in 10,000-25,000 births, that happens in two stages. The first, lasts for up to two years. Newborns with PWS are small for their gestational age (Ellie is below the 2nd percentile) with especially small hands and feet, have problems sucking and swallowing, and as such fail to thrive. Ellie needs to be fed primarily by feeding tube to survive. They are floppy, often have a very weak cry. Babies with PWS are very well tempered, and easy to care for.
At some point between the ages of 2 to 6 years old, children enter the second stage of PWS: the Hunger. Individuals with PWS lack normal hunger and satiety cues, due to a malfunctioning hypothalamus. They usually are not able to control their food intake and will overeat if not closely monitored. Food seeking behaviors are very common. In addition, the metabolic rate of persons with PWS is lower than normal. Left untreated, the combination of these problems will lead to morbid obesity and its many complications.
There are treatments, but there is no cure... YET!
On August 21st, our family will be participating in the One SMALL Step walk to support the Foundation for Prader-Willi Research. We firmly believe a cure can be found. The walk will be held in many cities around the world, with an overall fundraising goal of $500,000.00
Having just received her diagnosis, we haven't much time to raise money, but better late than never. Our goal is ambitious, $1000.00 and hopefully you can help support our cause to fund further research for this syndrome.
Our campaign page, and more information on the Foundation for Prader-Willi Research can be found by clicking this link:
http://onesmallstep.fpwr.org/dw/users/elliebelle/burnaby#
Thank you in advance for your support,
With much love and light,
Susanne, Jason, Jakob and Ellie M.