I am so excited to share "Living with CDKL5" from the AdaptiveMall site!
Click here for Lily's story
A few months back I saw the whole "living with" series on the site and emailed them to ask how we can take part and they sent me a questionnaire and asked for some pictures and I was thrilled to oblige!
I love how it turned out and am so grateful they included so many photos and even our CDKL5 and Me video I made 2 years ago.
So happy to be able to share our precious girl with the world and bring more attention to CDKL5!
Hope you all enjoy it as much as we do!
Awhile back our board (IFCR) received a request/invitation for one of us to attend a conference a family was holding in Albuquerque, NM. Con...
I wonder if I didn't have facebook I would blog more. I am sure I would but since I do have facebook..well you know. A 3 sentence status...
There we were laying on her bed, her tears were flowing down her face as mine sat pooled in my eyes just one blink away from spilling over ...
OK can I just say being a mom is hard? Can I get an AMEN? We have to lift each other up, because I know so many of us are doing enough of kn...
It’s a long drive from Phoenix back to home, luckily it’s almost all freeway and usually in the middle of the day so it isn't an awful ...