Ellie has a rare genetic syndrome called Wolf-Hirschhorn syndrome. This is the result of a genetic error on chromosome 4. It is estimated to occur in 1 in 50,000 births. Ellie also has right eye anophthalmia, which means she was born without her right eye. Ellies life has its ups and downs, but she continually amazes us and makes us smile. This is her story
Being happy doesnt mean that everything is perfect.
It means that you have decided to look beyond the imperfections...
Thursday, February 3, 2011
Weight update..
Ellie had a weight check yesterday. She has gone from just under 8kg's (17.6lbs) to
8.6kgs (18.92lbs) in 2 months. This is a massive 600gram increase. I cant remember the last time that Ellie put on that much weight.
Maybe all the custard, cream and milo deserts are starting to help her...
I am impressed at your dedication to keeping your story about Ellie current. I run the www.wolfhirschhorn.org web site and would love to get Ellies story out there for those that are looking for more information.
Great to hear!
ReplyDeleteNice Job Ellie!!! That's great weight gain!
ReplyDeleteI am impressed at your dedication to keeping your story about Ellie current. I run the www.wolfhirschhorn.org web site and would love to get Ellies story out there for those that are looking for more information.
ReplyDeleteWOW! That is great news! Keep it up Ellie. :)
ReplyDelete