CDKL5 Spotlight on Miriam
Meet 4-year-old Miriam from Kentucky! Mom, Belinda, shares about her sweet daughter.
Miriam Jolene had her first seizure at 2 days old. By 2 weeks old she was diagnosed with epilepsy and by 5 months old she was diagnosed with CDKL5 Deficiency Disorder.
Although Miriam requires our help with the majority of aspects of her care, I tend to find that I help “too much” when it comes to therapy, cognitive skills, etc. I have had to learn to let her go and do her thing and be patient. I found that I was preventing her from learning on her own. I had to take a step back and she has been picking up on things remarkably now! Miriam has responded really well to Vision Therapy while in Early Intervention, and Physical Therapy has been challenging but once it clicks, it CLICKS. Seeing Miriam overcome her challenges in physical therapy, cause and effect, or fine motor skill are awe-inspiring for us.
After receiving the CDD diagnosis on our then 5 month old baby, we were devastated to say the least. It took time (several months for mom, longer for dad) for us to get out from the darkness, and we still have our moments. We call if Grief. Because there are so few of us in each state, or each area depending on what country you live in, support is hard to come by. The Facebook Support Group has been the saving grace for us. Not only can we post questions about things that may seem silly or trivial, we have come to find we aren’t the only CDD Family with the same questions or curiosities.
We have also felt important by having an opportunity to help other families with advice, etc.
My advice to someone with a newly diagnosed child is to give yourself time. It’s okay to Grieve! You can still be that same parent you planned to be had your child been typical or not, just a lot stronger and a little more pushy with your child’s care. Consider joining the CDKL5 Parent Support Group page on Facebook, it has helped us through the dark times, tough times, and it feels great to help other families! Feel free to reach out to any one of us, we have likely all been there.
You can follow Miriam at her page: Milestones for Miriam CDKL5