Lily suffers from CDKL5 disorder. No new news to all our friends and family, but it is June and this was our first time acknowledging June as CDKL5 Awareness month.
CDKL5 disorder sucks. Really really sucks. Takes away everything you every thought of your child's future. It takes hopes and dreams and reconstructs them into something you would have never imagined being a dream. Hope for no seizures? Pray for her to talk? Beg for her to feed herself? I thought I would be begging God that she made the right choices, chose the right friends, met the right man. But no it is please let her have a day with out a seizure. Help her communicate with us without the words to do so.
It sucks. I don't dwell on the suckiness of it because it gets us no where. I focus on how she taught us to love. How she taught us to trust God. I focus on who she made us all become. I thank God for this disorder that changed us all. BUT I also wish it didn't have to be so hard for her. I pray that we find a cure and that is why I am on the IFCR board. It is why I fund raise. It is why I do everything I do. I want to make a difference for future generations. I don't want others to have to face this beast. I know science is vastly progressing and I know a cure is in reach. So I talk about it. I post about it and I ask people to attend our events. I will do this until I can't or a cure has been met.
I will ask you all to "like" us on FACEBOOK
I will ask you locals to come to our event on July 10th at Adora Trails Community Center 5:30-8pm
I will always fight for Lily. I will always fight for her friends. Almost daily I log on to see how her friends are doing on our support group and it seems like someone (often more than one) is in the hospital. Someone is suffering from seizures, tummy issues, breathing issues, etc etc. We have lost many precious kids to this beast and I simply can't sit around watching it all happen. We will always promote awareness and we will always do what we can to find a cure.
Help us fight! CDKL5.com
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 ...