Tuesday, August 31, 2010

Hi all,

Welcome to Miss Honors blog, We are all new to this kind of thing but want to get our story out there to other CDKL5 sufferers & families.

Honor Has just recently been diagnosed with gene disorder CDKL5 after a very long battle with Infantile Spasms since she was a few weeks old. It has been a very long road with all sorts of tests & medications that just havent worked.
Honor is the only diagnosed case of CDKL5 in New Zealand, she also has development delay, Meaning at 2years old she can sit & move around the floor but not crawl or use her hands to play or feed herself.
She cannot walk or talk & is slowly starting to focus for short periods. She has also just started smiling.
Honor has an older sister who is 4 years old & does not have CDKL5 or any other problems, she absolutly adores Honor & cannot do enough for her.

I look forward to you following us along with Honor & her journey through life.