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.